"This is the story of how we begin to remember,
This is the powerful pulsing of love in the veins.
After the pain of falling and calling your name out,
These are the roots of rhythm,
And the roots of rhythm remain.
(Paul Simon, "Under African Skies")
This is the story of Maggie, our third child. It is of course dedicated
to Claire, James, Elizabeth and Maggie. Love in all its forms.
Chapter 1 Hard Labour
Chapter 2 The Darkest Hour
Chapter 3 Acceptance
Chapter 4 A Mother's Courage
Chapter 5 A Special Child
Chapter 6 Perserverance
Chapter 7 Get On With It
Chapter 8 Faith
Chapter 9 The First Operation
Chapter 10 The Getting Of Wisdom
Chapter 11 The Problem With Wisdom
Chapter 12 Four Into Three Wont Go
Chapter 13 James And Lizzy
Chapter 14 The Future
"These things - the beauty, the memory of our own past - are
good images of what we really desire: but if they are mistaken for the
thing itself they turn into dumb idols, breaking the hearts of their
worshippers. For they are not the thing itself; they are only the scent of
the flower we have not found, the echo of a tune we have not heard, news
from a country we have never visited."
The words you are about to read, "these things" as CS Lewis
may have put it, are simply that, words. This story is certainly about our
time to date with Maggie but the telling of the story can in no way truly
convey the greatness of the story. You may read about the story but you
cannot savour it and live it, not the way that Claire and I have.
An event that initially was one of despair and hopelessness, with time
was to become not only a great gift of life but a gift of insight and
feeling which to that point in our lives was not known to exist.
I have tried to avoid getting too bogged down in detail and tried to
steer away from too much medical jargon. For this story is not about a
syndrome and its medical management. It is about a precious gift, our
little girl. It is about the feelings and thoughts that have evolved since
we first saw Maggie. It is, if nothing else, a love story.
The unexamined life is not worth living.
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CHAPTER ONE - HARD LABOUR
My mother groan'd,
my father wept,
Into the dangerous world
Helpless, naked, piping loud
Like a fiend hid in a cloud
In my mind I can still see the one-cent piece outside the Watson's
house. One-cent pieces went out of circulation in the 1980s. In fact if
you were to go there today it is probably still there bound up in the tar.
I tried to pick it up on arriving to take my labouring wife to the
hospital; Find a penny pick it up and all day long you'll have good luck.
Of course I couldn't pick it up, it was bound up in the tar. Besides
no-one believes in silly superstitious sayings anymore do they?
Claire had called me at work at about 3 o'clock. "Work"
consisted of being an emergency physician or an "ER" doctor as
many people would understand it. In addition, the emergency physicians in
Tamworth also double up as the intensive care specialists and medical
retrieval consultants. It can be hectic. In her typical fashion Claire had
called to say she thought she was in labour. Having witnessed her labour
twice before I couldn't understand how you could only think you were in
labour. Claire had dropped into the Watson's while walking back from town,
James and Lizzy, our two other children in tow. She was tossing up walking
home and then walking to the hospital, which was about twenty minutes
away, but didn't think she could quite make it! We had already arranged
for the Watsons to look after the children throughout the labour.
The Watsons consist of Tim and Ali, their four daughters Pru, Anna,
Polly and Tess, the dogs Aggie and Boof and an indeterminate number of
cats. We met them through Polly who when 14 years old knocked on our door
and asked if she could play with James who was then aged about one. From
then their entire family became like an extended family to us. They
delighted in James, especially Polly. When Lizzy came along she became
just as special, and Ali became her godmother.
After getting Claire's call I left work and took her from the Watson's
to home and then to the hospital. The anticipation was so great. We
already had two delightful children in James and Lizzy, and here we were
about to have another cherub. The Watsons were excited and Claire's
parents being in town was another bonus. While in labour ward I was called
to attend a cardiac arrest in the emergency department! Claire was only a
few centimetres dilated, so I had time to rush to that and then organise
Phil Hungerford, a friend and colleague, to cover me.
Free at last I chatted to Claire who initially was in very little
distress. Claire commented that if this was as bad as it was going to get
then it would be easy.
So much anticipation. So much expectation.
My first inkling of something being wrong occurred after one of
Claire's "examinations". The midwife couldn't make sense of the
fontanelle and thought the baby was a bit extended. This I knew could be
normal but I also knew that such positions can occur because of increased
extensor tone (such as in cerebral palsy) or with neck tumours. Claire had
been breach until the week or so before labour and her obstetrician was
going to organise an ultrasound to look for any reason for this, but
didn't need to once the baby turned. As Claire dilated, the midwife and
then Dr Vines, could make no sense of the fontanelles.
Claire became fully dilated quite quickly and, according to her,
without too much distress. Then nothing much seemed to happen.
Dr Vines very patiently waited around and did a few lead sketches of
Cathy Freeman and Bill Clinton. Dr Vines had been practicing obstetrics
for over twenty years. He entered Obstetrics later in his medical career,
having had a colourful career including a lengthy stay working in Papua
New Guinea. I had always felt he was a shrewd clinician who could draw on
a wealth of experience. I wasn't wrong.
After a few more hours Claire's contractions became very strong, but
Maggie, as she would soon be known, wasn't going anywhere. After an hour
or so of pushing, far harder than with our other children Maggie was close
to being born. Claire had been monitored well throughout the labour but I
think we were all feeling a bit anxious. This was a third child that
didn't want to come out. The fontanelle was unusual and the labour had
been most bizarre. Dr Vines told Claire that he would give her a couple of
more pushes and then put forceps on. Such statements to Claire are not
left unchallenged. Claire summoned up one almighty last effort.
With one huge surge Maggie's head was born. Claire exclaimed,
"What was that?" and explained that she had felt and heard an
awful clunk, that was audible to all in the room, in her pelvis. From
there the delivery proceeded routinely.
..and his head is born. I know he's a boy, he looks like one. An odd
thing to know but know it I do. Another contraction proves me right. He is
perfect. Beautiful. What a euphoric moment, a euphoric day. There are
three of us now, a family. He will be James and he will change our lives
by changing the way we think and feel, from this day forward, till death
us do part…
A precious, unforgettable moment.
That moment is not this one. This is a moment of disappointed silence.
We knew immediately that Maggie wasn't the perfectly healthy child we
had expected. What we had presupposed had not eventuated. The perfect
child to which we were entitled had not been delivered.
I had seen that penny. I tried to pick it up. Some things are meant to
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CHAPTER 2 - THE DARKEST HOUR
The darkest hour has only 60 minutes. Morris Mandel
The darkest hour started soon after we recognised that Maggie had
syndactyly (fusing together) of the bones in her hands and feet. Knowledge
in such a situation is a two edged sword. It helps with understanding but
also leaves you painfully aware of what might be. It was obvious to me
that Maggie's syndactyly was more than just webbing of the digits, she had
major structural anomalies. Whilst not an expert on congenital syndromes I
was also well aware that such problems are often associated with other
internal defects. Dr Vines called for a paediatrician more concerned about
Maggie's fontanelle than anything else.
At times it can be difficult to separate dad from doctor. Most medical
people I am sure suffer from this at times. I was in the delivery suite as
a husband, to support Claire through another labour, to witness and to
celebrate the miracle of our new arrival. In an instant our expectations
were shattered. We had a child with multiple problems, our joyous
celebration never occurred. What we had instead was muted silence.
The midwives too were stunned. They placed Maggie on Claire's chest and
gave me an oxygen bag and mask device to hold on Maggie. I noticed
Maggie's hands and Claire noticed her feet. No-one said anything. I
fumbled about with the bag and mask as if I'd never seen one before.
Maggie seemed vigorous enough, but we knew there were problems.
Maggie was taken away shortly after her arrival by the paediatrician,
David McDonald. Claire by then was exhausted, physically and emotionally.
The husband in me stayed with my wife to support and be supported. The
father was stunned, unable to fathom what had happened. I hoped and prayed
that things might not be as bad as they had the potential to be. The
doctor in me had noticed a couple of things that left me with some hope.
Firstly, Maggie had cried. Not a whimper but a good hearty new born
squawk! Secondly, Maggie moved and flexed like newborns do and her tone
seemed normal. I had a brief nurse before she disappeared to the special
care nursery and she snuggled up, not too cranky about the ordeal she had
just been through.
So much of the first few days of Maggie's life was spent in a daze. It
all seems so distant now. Yet for a long time, to remember those days
brought painful memories. It is difficult to describe to someone who has
not experienced such feelings. Ruth Cracknell, in her book "Journey
From Venice" is able to encapsulate such a time beautifully. On page
249 she is discussing the first few days after her husband's death.
Intermingled with her own words is an adaptation of a line from the
"But I remember all this through a mist. I was on the far
side of the mist. A shade. Insubstantial…
…my heart, you see, had turned to wax and was
David McDonald returned after examining Maggie and gave us the facts
"She's got Apert syndrome."
I'd heard of it and soon I would realise that I had looked after
someone with it once before.
" They get syndactyly of the hands and feet, synostosis (fusion of
the bones) of the skull and midface hypoplasia (delayed growth of the
middle of the face)."
I recall even now that I was desperate to know about their mental
" In terms of development about 50% have mental retardation and
50% develop fairly normally though no-one is really sure about this. It
occurs as a spontaneous mutation at an incidence of about 1: 100 000 so
the chances of it happening again are negligible. But for her from now on
it will be autosomal dominant which means she has a 1 in 2 chance of
passing it on to her children."
Her children! She's only half an hour old!
"She's got a cleft palate which is part of the syndrome."
The news wasn't getting any better.
He went on to explain that there can be other associated conditions
such as cardiac, gastrointestinal and kidney defects but that there was no
evidence of them. David continued on with the need to organise surgery on
the skull, which would probably be required in the first year, and then
surgery on the hands. He mentioned that they can get raised intracranial
pressure with or without surgery and that this can cause further problems.
After David left I helped Claire shower. It had been a difficult labour,
Claire was weary, and fainted on the way back to bed. One of the nurses
helped me, and Claire came around within ten seconds or so. At a later
time Claire told me that when she came round, for a fleeting moment, she
thought it had all been a dream. That moment passed and the reality
By the time we got to see Maggie a drip had been put in and she had
dextrose running in because of her low blood sugars. She had been put in a
humidicrib because her oxygen saturations were a little bit low. We sat
there for a while with our baby in the box. Claire had hardly held her and
couldn't hold her now. Not holding Maggie and putting her to the breast
was one of Claire's greatest regrets of Maggie's birth. We sat talking for
a while, too dazed and too tired to make any sense of it. We did figure
that the bony clunk Claire felt at the end of the labour was exactly that.
Maggie's head couldn't mould (a process where the skull bones slide over
each other during birth) because they were already fused.
Even though it was one in the morning I had to find out more about
this. I headed down to the Emergency Department office and got onto
medline on the internet. I scanned the last few years of journals on Apert
syndrome and gathered all the information I could. It would be true to say
that nearly everything I know today about Apert syndrome I learnt in the
first 48 hours of Maggie's life.
I made two phone calls before leaving the hospital. The first was to
Claire's parents. Nothing like this had ever happened on either side of
the family. I remember Claire's father would be particularly upset by it.
John had a habit of counting all the fingers and toes of his newborn
grandchildren. For some irrational reason I was thinking about this as I
was telling him about Maggie. Next I spoke to Ali. I drove home via their
place and noticed their light was on. I went in and spent an hour or so
talking to Tim and Ali before falling asleep on their couch. Some people
have a therapeutic effect.
Sunday was without doubt the worst day of my life. It started off
alright with Lizzy waking me up by jumping on me. I then had to tell her
and Tess about Maggie. I'm sure I told that story another hundred times
that day. Initially I felt like I had to apologise for Maggie, and explain
what it all meant. It was better to tell people outright that Maggie had
these problems, less they be shocked by her hands and feet, or different
facial appearance. This however would change and somewhere in the coming
to terms with what had happened, was the realisation that Maggie was an
act of creation, a little girl. First and foremost she was a baby, not a
syndrome, and gladly we realised this sooner than later. I recall, when
Maggie was less than a few weeks old, showing her to people and not
feeling that I had to justify or apologise for her.
Family and friends carried us through that day. John and Mary kept
James and Lizzy entertained, as well as fed. Claire and I could dedicate
our time to being at the hospital with Maggie. Maggie was out of the
oxygen but still had low sugars. Claire finally got to nurse her and put
her to the breast. The cleft palate meant it would be difficult to
breast-feed her and Maggie didn't seem to want to feed. Maggie seemed to
spend the whole day asleep and doing nothing. I'm not sure what we
expected her to do! Our other children, indeed most children, spend a lot
of time doing nothing initially. What was difficult was the feeding.
Maggie couldn't seem to establish on the breast. There is nothing unusual
about that, children have to learn to breast-feed as much as mothers do.
However with Maggie they were checking her blood sugars and they were
consistently low. After each feed she would be jabbed, her blood sugar
measured and then a nasogastric tube (a tube through the nose and into the
stomach) inserted and a formula feed dripped in. I can't imagine Maggie
warmed to breast-feeding knowing that after each feed the above sequence
of events would ensue, as necessary as they were. I could only watch my
daughter and wonder what life had in store for her.
It is Easter Monday. Maggie is three months short of her second
birthday. She stands on the path by the front gate, looking at the garden.
It is a beautiful autumn morning. So serene. It reminds me of Sunday
mornings in Sydney when I was a boy, before consumerism took over that
city. Before so many city dwellers lost communion with life. Silence
everywhere. There is a suggestion of a breeze. In a few short weeks such a
breeze will chill the morning air. Today, it just adds movement to the
sunlight. And in our garden, beaming brighter than anything else is
Maggie. Alone on the path, Maggie twirls and dances, as if to imaginary
music. She loves music. She studies everything, carefully, precisely. A
curled up leaf. She stoops to pick it up. Dexterity defying her fingers.
The leaf is turned over, studied carefully. Turned again. Having processed
everything, it is discarded, Maggie is now beyond putting everything into
her mouth. She looks up and sees something else to explore. Her face is
now beaming even more brightly. It is the dogs! Lying peacefully, their
rest is about to end. Their search for relaxation is one of eternal hope
but everlasting despair. It is Gabby who suffers first, Maggie squawking
as she launches onto her. Oli is quicker, he knows he is next and springs
to his feet. They are resigned now to play, to be chased by Maggie.
We saw a few of our closest friends that day, as well of course as our
family. I can't recall too much of what they said, it probably doesn't
even matter. What I recall is that they were there with us. Sharing our
joy on the one hand and our grief on the other. I look back now and wonder
what we were grieving about. What we had lost was our expectation, our
naivety. Somewhere along the way we had forgotten that life isn't really
ours. We don't really create it, we don't control it. All we can do is
respond to the circumstances of our life.
That evening after everyone had gone Maggie was back in the nursery.
Still on her nasogastric feeds, still being jabbed fourth hourly to have
her sugar checked. We were at our lowest ebb. Claire was particularly
upset because she couldn't feed Maggie. She had always been a strong
advocate of breast-feeding, always an instinctive mother. Yet here she was
unable to feed her baby. On top of that we were tired, and still yet to
get any perspective on what had happened and what was before us. Before I
left we hugged and we soon became a crumpled wreck of tears on the floor.
This was total devastation. The crushing of our souls. The ruination of
After I left I returned to the Watson's, where the kids were still
staying. There was some relief for me, I was away from the hospital back
with my other children, back in the real world. Even so, I spent the
evening still staring from the far side of the mist. How much harder it
must have been for Claire, still in the hospital, living out our
nightmare. Somehow though, that night, Claire started to turn it all
around. Our darkest hour wasn't over, but the clock was ticking.
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CHAPTER 3 - ACCEPTANCE
God asks no man whether he will accept life. That is not the choice.
One must take it. The choice is how.
Henry Ward Beecher.
Do not seek the wind in the field. It is useless to chase what is
It is August 14th 1998. Claire is 33 today and Maggie about 5 weeks
old. It is a Friday and I take Claire, Lizzy and Maggie on a picnic lunch.
James is at school. The Old Vic Café has prepared lunch, beautifully
presented in a hamper. A Mezze plate, sandwiches, noodles, chocolate
brownies and coffee. We were to go to Nundle, about 50km away but Claire
was getting a bit testy about the length of the trip, so we stop at
Chaffey Dam. We have our picnic, but Claire and I are not really in the
mood to celebrate. Not yet. It is a sunny day but very cold. It is winter
and this season reflects our mood. Except for Lizzy. She will be three in
two days time. She is proud of her new baby and she is on a picnic with
her mum and dad. After eating it is time to play, to run, to embrace the
moment. Life for her could not be better. She is our fire on this day,
making sure the cold winds of winter don't get too firm a grip.
Without doubt, the most significant thing for me in coming to terms
with this was accepting what had happened. There was no point dwelling on
what if, or why us, or did we do anything wrong. It was Aristotle who
wrote the analogy of life being a card game, and having to win that game
with the cards you had. Well, Maggie had her cards now, and her family and
friends had to be her Aces.
Our acceptance of Maggie, as she was, as our beautiful daughter
deserving of our total and unconditional love, was the first step on which
everything else was built. This is also true for others, and Alice
Tate-Barnett, of Orlando Florida, whose six-year-old daughter Shirley has
Apert syndrome, summed it up thus, "When I brought my daughter home
from the hospital, I placed her, in her car seat, on the floor and just
stood looking down at her and wondering to myself, "What in the world
are we going to do with her?" I felt so overwhelmed. It was at that
time that my 18 month old son walked over to her and just laid his little
head so lovingly against hers and my answer become so very clear. We are
going to love her."
Father Dwyer, one of our local priests, on one of those early days in
hospital was the one that told us that Maggie was an act of creation, made
exactly how God had wanted her. I felt comfortable with this. Even in my
unfounded grief I had come to believe that Maggie had a far greater chance
of inspiring people than I or anyone else I knew could. Claire and I had
talked quite a few times about how good life had been to us. We had
discussed that one day something really bad was going to happen, that our
wonderful life just couldn't continue. But both of us, even in our darkest
hour, admitted that this wasn't that tragic event. How could a new life be
Maggie had been given to us and we soon realised that she had a life to
live and we had to give her every opportunity that we could give to our
other children. We couldn't be sad about Maggie. Sure there was the
initial shock and despair, but that had to pass and it did. Claire often
spoke about fulfilling your own prophecy. If we decided that Maggie
wouldn't do something then there was a good chance that she wouldn't.
Maggie would do what Maggie could do, and it was our job, as with our
other children, to give her that opportunity.
Claire is dreaming. Maggie is only a couple of days old, and Claire,
sleep deprived, will remember this dream. Maggie and Lizzy are with her.
It is winter and they are walking to the Emergency Department to meet me
for lunch. Maggie is in a dress, wild curly hair everywhere. She is two,
maybe three years old. Animated. Lizzy is with them. Maggie is excited
about having a pie for lunch, just like her big sister. Maggie is running
to meet her dad, just like her big sister.
It is hard to determine a precise time when "the darkest
hour" finished and I no longer felt despair for Maggie. Somewhere
though, as Claire and I came to terms with what had happened, we were able
to see through what had happened. Our darkest hour is a distant memory
that enabled us to experience the joy of life in a whole new dimension.
There is an Apert listserver, run by Cat and Don Sears in the United
States. It has a number of subscribers from all over the world and in a
posting on it, Heather Scott offered her reflection on this topic;
"Nathan will be eight months old this week. I feel like RJ and I have
come so far. The most shocking day of our lives seem to be so long ago. I
know now the joy that you all spoke of when I first signed on this list.
And on the hard days, there never fails to be a funny comment from Max, or
an uplifting letter like the one from Shayne. Thank you all for your
As explained in the last chapter, part of coming to accept Maggie was
to overcome the feeling of needing to explain Maggie to everyone.
Initially wherever we took Maggie I felt a need to explain her
differences, even justify them. Fortunately though, within a few weeks
this phase passed. I didn't feel I had to justify Maggie at all. This is
not to say that it only took a few weeks to come to terms with what
happened, it clearly took much longer. But the need to justify or explain
differences passed. Many people are unaware Maggie has any problems at
all. When her eye was first patched people would ask if she had cut
herself, and when the casts were on after hand surgery, they wanted to
know how she broke her arm! We don't have to explain our children away,
they are an act of creation.
Lisa Guyette brought up these feelings on the list server, and they are
obviously experienced by many people who have disabled children. Lisa
wrote, "many parents of kids with disabilities or any physical or
mental problems at times get this syndrome (supermarket syndrome). It
brings on anxiety and fears when you take your child to the store. You
have to muster up the energy to deal with people's stares, cold looks or
those that feel they are allowed to ask you anything they choose. I knew I
had something, but now have a name to put with it. Actually today I had a
freeing experience. It has been coming on for a while now. My daughter at
16 months loves to go out to eat. She doesn't complain and really even
likes it if I'm talking away to a friend, my mother or husband. She loves
the new foods she gets to taste. Today I realized that why this is also
becoming a real joy to me too, is because I have realized I owe no one any
explanations! Nor do they owe me any either about their children or
selves. Just three or so months ago I honestly felt I needed to explain
why my daughter might have half a head of hair and scars, or casts or
black eyes. Now they or them aren't really a concern to me anymore, like
they or them wouldn't be if my daughter didn't have these things."
Janine Krebs of New York responded to this thread, and clearly felt the
same way when she wrote, "When Emily was born I used to try to hide
her hands underneath the receiving blanket when I took her shopping. Of
course, she would always pull it off. It wasn't until I became comfortable
and accepted her and the syndrome that I realized that people were looking
at her just because she is an adorable child. To this day I take such
pleasure in taking her everywhere with me. Not a day goes by that she
doesn't say hello to at least every other person in the store, even the
same person up and down the supermarket aisles. The funniest of course was
the day my mum and I were shopping at Lord & Taylor and Emily kept
saying hello to the mannequin and didn't understand why it wasn't saying
hello back to her. She is truly the most social child I know."
Alice Tate-Barnett of Florida also responded to this thread, with a
rather witty reply. Nonetheless, the truth in the reply by the woman in
the following excerpt, does help put things in perspective. Alice wrote,
" I, too, felt the need to say something about Shirley's Syndrome
while stopped by people, in public, at first. I remember one day a woman
stopped us while we were strolling in the neighbourhood. She wanted to see
my little one. I touched Shirley's hand and said, "She came with a
few problems". I have never forgotten the woman's wonderful words of
wisdom: "Honey, they ALL come with problems!"
When Maggie was about nine months old, Claire and I were asked to speak
at an ecumenical service, at the hospital, by Father Peter. For the
reading we chose John, chapter 9. The part of this reading that most
appealed to me was, " Rabbi, who sinned, this man or his parents, for
him to have been born blind? ' Neither he nor his parents sinned,' Jesus
answered, 'he was born blind so that the works of God might be displayed
in him." This seemed very apt.
Father Richard Gleeson, the parish priest in a homily a year or so
later gave me greater insight into this reading. He was discussing another
reading but explained that in the times of Jesus, illness was not
understood as it is in today's terms. Pathology and physiology were not
understood. When people became ill or afflicted it was because of some sin
they had done, and if no sin could be found for them then it must have
been a punishment for the sins of one or other of the parents. This helps
explain the question in the passage above, a question which seems odd in a
modern and secular society such as ours. For me though it is the answer,
so beautiful in its simplicity that holds the appeal of this reading. I
mentioned earlier that I had already come to believe that Maggie had a far
greater chance of being inspirational than anyone else I knew. Jesus'
answer in the passage above leant credence to that belief.
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CHAPTER 4 - A MOTHER'S COURAGE
We do not attatch ourselves lastingly to anything which has not cost
us care, labour or longing.
Honore de Balzac
Life shrinks or expands in proportion to ones courage.
The worth and value of a man is in his heart and soul. Their lies
his real honour. Valour is the strength, not of legs and arms, but of
heart and soul; it consists not in the worth of our horse or our weapons,
but in our own. He who falls obstinate in his courage, if he has fallen,
he fights on his knees. He who relaxes none of his assurance, no matter
how great the imminent death; who, giving up his soul, still looks firmly
and scornfully at his enemy - he is beaten not by us, but by fortune; he
is killed, not conquered.
The quote by Ernle Bradford was about the Spartans at the pass at
Thermopylae during the Persian wars. His quote was obviously about a
military battle and is far removed from a newborn baby. Yet somehow this
quote, which I had saved from my high school days, seemed to sum up the
courage of Claire in the first year or so of Maggie's life.
Claire has always been a determined person, always one to rise to a
challenge. This event in our lives proved to be no exception. Claire
decided that Maggie would be given every opportunity and firmly believes
that breast-feeding is best for babies. This would present difficulties as
Maggie had a cleft palate, involving the soft palate only, but enough to
prevent the amount of suction babies need to suckle. On Maggie's second
night of life Claire spent nearly all night trying to feed Maggie. By dawn
Maggie was getting the hang of it and her blood sugars were sufficiently
raised that the jabs after feeds and the nasogastric tube became
unnecessary. Despite this initial early success, Maggie's feeding remained
a problem for a while. Claire persisted with the breast but Maggie
struggled to put weight on. Claire received some excellent advice from the
Nursing Mothers Association and tried numerous tricks from cleft palate
teats to supply lines. The supply line effort was almost amusing. Claire
would express off some milk into a special container and connect the
supply line to one end. She would then put Maggie to the breast and insert
a supply line into her mouth. To improve the flow she would rest the
container on something high behind her, and sometimes try two supply lines
at once. There were so many lines, moving parts and bits of plastic
looping and spiralling all over the place, she started to resemble The
These first four to six months were a difficult time. Maggie failed to
thrive, despite Claire's determined efforts. There was no evidence that
Maggie could hear, at times we wondered if she could see. Maggie rarely
smiled and really reacted minimally with her environment. We had an always
hungry and non-thriving baby and it was Claire who bore the brunt of it.
Yet in the force of this gale, Claire would grin and bear it, soldiering
on in the hope that things would improve, always conscious of trying
something new. While it easy to talk of an unconditional love that parents
may have for their children, there is no doubt that a baby who smiles, who
responds to your voice and touch does bring a selfish reward.
By November, when Maggie was four-months old, she had only put on a few
hundred grams. Still tiny, she had also failed to get any sparkle in her
eyes or thrive in the ways that babies do. Maggie would suckle well enough
to get a letdown, and Claire was producing lots of milk, but still there
was no significant weight gain. It was probably a combination of only
getting foremilk, and a really huge effort on Maggie's part whereby she
consumed a lot of calories that accounted for this. In November, Claire
hired a breast pump from the Nursing Mothers association and expressed
feeds for Maggie.
Occasionally Maggie would be supplemented with formula, but very
infrequently. Claire would get up three or four times a night to express
and express multiple times during the day. She grew to hate it but knew
how important it was and persisted for 12 months. Despite the lack of
sleep, Claire would still get up at six in the morning and run for an
hour. This was her meditation time, that part of the day where she got the
strength to get through it. By January, before her first surgery, Maggie
had started to gain weight at a great rate and was starting to interact a
Claire enjoyed feeding James and Lizzy. Apart from the nutritional
benefits Claire felt breast-feeding helped forge strong emotional bonds.
It was quite upsetting for her to be denied this opportunity to the same
extent with Maggie. Nonetheless Claire knew that expressing and
bottle-feeding was the right thing to do. As Maggie got older she would
start to squeal with delight at the sound of the breast pump. Claire
expressed so frequently she often left the pump on the floor by the lounge
suite. It was not uncommon to see Maggie stroking it longingly; in very
much the same way the other children would stroke the breast while
Feeding, and the extraordinary efforts Claire went to, is just one
example of the dedication and determination Claire showed in the first
year or so, there were others. During Maggie's surgeries Claire would stay
in the hospital every night. I would frequently offer to stay in hospital
overnight but Claire could not leave her. Claire's sole reprieve was to
get out for an hour each day for a hard run in Parramatta Park.
We look back on it now, and look back at old photos and Maggie was so
scrawny at 4 months of age. Yet Claire persisted and succeeded in feeding
Maggie for 16 months on breast-milk. Apart from her operations Maggie has
not required hospitalisation for anything else, and has only had a few
minor respiratory and gastrointestinal illnesses. Many children with Apert
syndrome are prone to respiratory infections, and because of their much
smaller airways, often require hospitalisations. It may be that we have
been lucky, but I'm sure the benefit of antibodies and other goodies in
breast milk played a significant role in Maggie's good health.
During lent in the year 2000 Claire and I were reminiscing one night on
the past couple of years. It was still a few months short of Maggie's
second birthday. Claire told me that for a long time she had trouble
remembering Maggie's birth and preferred not to think about it. Part of
the reason for wanting another child was to replace the sad memories of
Maggie's birth. James' and Lizzie's births were such momentous occasions,
forever etched in our hearts, and Claire desired to relive that joy again.
Yet the joy that Maggie brought had superseded those initial memories.
With the benefit of time it became impossible to view Maggie's birth in
isolation. It would be like viewing Good Friday in isolation. The joy of
Easter Sunday is that the death of Good Friday is conquered. The joy of
Easter Sunday could not exist if Good Friday had never happened. They are
inseparable. So too, the joy of Maggie.
In the same conversation Claire spoke of how difficult the first few
months were. Each morning Claire would wonder how she would get through
the day. The constant feeding of an unsatisfied, non-thriving baby as well
as the demands of the rest of family life, made every day an effort. Yet
Claire got through every day, one day at a time. It was subtle, and
occurred slowly, but things did improve. By Lent of 2000 Claire was saying
that if today was her last day on Earth, then she could not have asked for
a better day to finish on.
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CHAPTER 5 - A SPECIAL CHILD
History is an encounter between character and circumstance.
The only freedom we have is the freedom to choose a response to our
I must admit I still cringe at the words "special child".
Many people have said Maggie is a special child but I've often felt it is
a way of putting a positive and "nice" twist on a less than
ideal situation. However, Maggie has been a special child, for she has so
changed our outlook on life. Claire once said that having Maggie has
helped us to develop a sixth sense. It has given us a depth of
understanding and a simple appreciation of so many things we used to take
for granted. Cat and Don Sears in the United States, whom I mentioned
earlier, set up an Apert information and exchange list-server. Their
Daughter, "Teeter", who has Apert Syndrome, has an informative
web site, with many links. (www.apert.org/)
In a posting to the list-server I wrote, "I must admit I've never
liked the word "special child" it somehow always conveyed to me
the wrong connotation. Yet on the other hand Mooki is so special, because
of the way she has made us re-evaluate what is important in our lives and
what we really want for our children. We could not have had a more
Joni Stephens in a letter to the List server expressed it beautifully
"My son has had more than 40 surgical procedures since his birth. It
becomes very overwhelming--I, too, wanted to run away with him and never
go back to the doctors' offices. But it does get better. I promise. That
doesn't mean there aren't some surprise days when I think he is doing
great and suddenly we get some unexpected news. But they are few and far
between, and he is such a wonderful child, I've just learned to take it
one day at a time and be thankful for each day. Hang in there. My son is
seven years old, and is doing great in first grade. He is smart as a whip,
and the most loving child you will ever meet. There were times when I
never thought we would ever get to this point. But we have. And I treasure
all that we have been through, because it has changed me and my family for
the better. We don't take anything for granted. We are grateful for the
smallest things - a smile, a word, a hug, a laugh, a crayon drawing by a
seven-year-old boy, a jump, a child running, a month without a doctor
visit, and so many other things."
It is true; you learn to take nothing for granted. You learn to love
your children, more than you think you can. And the little things, the
milestones, the mischief, the funny things that children do, they are all
I have included a selection of my postings on the list server below. To
many of you these will appear as accounts of the ordinary things that all
children do. These things aren't ordinary, they are extraordinary, but we
don't always see it.
14TH February 2000
I have to relate a rather amusing story about Maggie (now 19 months).
One of the advantages of living in a small rural city (Tamworth's
population is ~50 000) is that there is a great sense of community.
James (in his third year of school) had his opening school mass last
Friday. Maggie feels very at home at St Nich's church and spent most of
the time wandering up and down the aisle entertaining the children. As
his her usual practice she managed to get to the altar where she
normally sits on the steps performing. You can imagine how distracting
this was to 200 odd primary school kids! She sat there clapping when the
School captains were announced feeling right at home with the
Her masterstroke occurred during communion. Seeing that the
electronic keyboard, which is similar to the one at home, had been
vacated she climbed onto the chair and started bashing out a tune!
Claire hurriedly rushed to get her, but several bars of "Mooki's
Apert concerto" had all the kids very amused, and fortunately the 2
1ST February 2000
Just a little update on Maggie (Mooki) now 18 and half months.
I can report that Maggie has the following normal milestones; -
(a) Now completely dominates her 2 older siblings
(b) Squeals like a stuffed pig when she doesn't get what she wants!
(c) Can scratch her bottom and pick her nose
(d) Has discovered gravity on over a thousand occasions. All unwanted
food products and empty drink containers, go over the side of the high
chair, and the phone gets pulled off the table at regular intervals.
(e) Will stop eating what she has got, and squawk for what you have got,
if you happen to be eating different things.
(f) Stops at regular intervals to applaud herself when she is walking.
I've checked the paediatric texts but can't find these milestones
mentioned. I think she is on target!
3RD February 2000
"Yes I forgot the toilet thing! Maggie like most 18 month olds
loves toilets and rubbish bins. She loves unraveling toilet roles, as
many as she can. There was a time when it used to drive me mad but I
have now learnt that Maggie + 1 toilet role = a good half hour of peace
(and very cheap too!) Maggie also loves to close the door behind her
when any mischief is about to occur!"
I think Maggie is special but as Ann Luxton from Auckland, whose
daughter Amy has Apert syndrome, once commented, you can't always
believe the stuff about these children being special gifts from heaven.
There are poems and other pieces written, which speak of angels
conferring and selecting parents for such children. It would be nice to
believe, but these children are not all accepted, they're not all loved
and wanted. One parent wrote to the list server, her child has Pfeiffer
syndrome, different to Apert, but with a number of similarities. Her
husband left soon after the birth and the impact of a
"different" child had some bearing on this. Liz Niemi in
responding to this initial e-mail responded thus, " We're now to
the point where things are going great, and we've found that Jake is
more amazing than we could've ever imagined! We would NEVER give him
back for anything. He makes us smile, laugh and cry all at the same
time. Everything he does amazes us - he melts our hearts and does so
with almost everyone he meets. The kid is FULL of personality and life.
When I see him smile, or laugh - it's ALL worth it. I'm sorry that you
are going through this alone - but please remember that YOU CAN DO IT!!
Rely on others and a little faith in God that things will be ok. It's
too bad, because your ex-husband is missing out! Someday, he'll regret
his decision. If he can't be there through the tough times, he doesn't
deserve to be there during the GREAT times - and believe me - there will
be great times!"
Maggie made us realize how important it is to focus on the simple
things in life. It is nice to think that your children will be well
educated, get a university degree and be successful in their chosen
careers. However these are really only peripheral issues. It is more
important that they have strong relationships with their friends and
families. It is more important that they lead a life of faith and
substance. It is more important that they learn to love and to be loved.
It is more important that they have a sense of self-importance, and a
thirst to make this world a better place. It is more important that they
strive to reach their potential. It is more important that they be touched
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CHAPTER 6 - PERSERVERANCE
The true nature of a thing is the highest it can become.
That which is before us and that which is behind us does not matter
compared to that which is within us.
Ralph Waldo Emerson.
The first five or so months of Maggie's life was in many ways a
struggle. It was a time when we had to come to terms with so many things.
Maggie's failure to thrive, and her apparent deafness meant she developed
very little. It was only when Claire started to express feeds that Maggie
started to gain weight, and with this to become more alert and
interactive. Indeed in the few weeks before her first operation she
developed a glut of milestones. There seemed to be an exponential increase
in her interaction with us. The milestones have been coming thick and fast
Maggie began the terrible twos well before the age of two. What a
milestone to achieve early. Now, at about 20 months old, she knows what
she wants and if she doesn't get it the squawking is on for young and old.
Today I am being treated to my favourite, the kitchen bench top routine. A
CD player rests on the kitchen bench top. Maggie points at it, utters some
unintelligible noise and starts banging the kitchen cupboards. Translated,
this means, " put some music on and lift me onto the bench, I want to
dance!" Today I am not free to do as commanded. So the pointing
becomes more vigorous, the banging on the cupboard louder. This is a
battle Maggie will lose, and her final act in defeat is to lie prostrate,
arms outstretched, crying crocodile tears. This has been a magnificent
The thing requiring most persistence was to maintain faith that something
good would come out of all this. As Father Richard said, "Grace would
come." On a more practical note persistence was required to keep
multiple medical appointments, many of then in Sydney. In addition Maggie
had very careful surveillance of her hearing under the care of Dr Malcolm
Robilliard, her vision under the care of Dr David Moore as well as
appointments with her paediatrician Dr Pat Donnelly.
The hearing tests were to become an interesting routine. I took Maggie
to many of these sessions. I have a fairly significant hearing deficit
myself and at the first test, I thought Maggie had done really well, she
certainly heard more sounds than I did. It was only when they said her
hearing loss was profound that I realised the extent of my own problem!
These tests involved a series of sounds at different frequencies. If
Maggie turned to the sound then she was rewarded with a puppet show or a
light display. As she got older it became apparent that at times she was
far more interested in the toys (aimed at distracting her attention), and
that she could guess when the sounds, or rather the display, might be
Her hearing still remains a problem. Tests at about 18 months were
normal, but her speech development has been slow. Maggie had grommets
inserted in her ears at the time of one of her hand operations. The cleft
palate also can cause difficulties with speech development. This though is
one of those things we just need to persist with.
Apert syndrome is associated with bony fusion of the face and skull. One
of the consequences of this is shallow orbits (eye sockets). Apart from
giving the appearance of the eyes protruding a little more than normal,
this can impair the function of the tiny muscles around the eye. As a
result a squint or lazy eye can develop. Maggie has a squint and has had
numerous eye appointments. Her orthoptist has to trick Maggie into moving
her eyes in certain directions to see how well Maggie's eyes are aligning
themselves. At times Maggie has needed to have her eyes patched, but her
vision seems to have developed reasonably well.
We needed to keep a watchful eye on Maggie's progress and have done so
I think without developing too much paranoia and without being
Broadly speaking there are four main groups of milestones children need
to develop. These are social skills, language development, fine motor
skills and gross motor skills. Maggie is about the most sociable child you
could meet, and developed her gross motor milestones within normal limits.
As noted above her speech development has been a little slow. It is hard
to know what "normal" fine motor control is for Maggie. Suffice
to say, she can do most things she needs to with her hands, even if it is
a little unorthodox.
Maggie has to live in this world, to develop as her own person. She
needs the same degree of guidance as James and Lizzy. No more, no less. It
is easy to think of Maggie reaching her potential as defined by normal
standards. Her vision and speech development, her hand function and so
many other things will contribute to her reaching her potential. However I
think these external things are but a manifestation of who we are, it is
within our own that we need to reach our true potential.
Maggie is trying to get her toy pram up the back kitchen step. A few
minutes ago I helped her do it. Then she gave me her hand to get a lift
for herself up the step too. This time she doesn't see me. Inside the
pram, is the elephant with the burnt ear, lovingly wrapped in a cot sheet.
She tries hard to get the pram up the step and almost does, but squeals
when she fails. This time Lizzy helps her, but Maggie does most of it.
Once the pram is up, Maggie gets up the step herself, she doesn't need
In May 2000 I had the privilege of attending an evening of reflection
with Caroline Jones. Caroline Jones, one of Australia's most famous
broadcasters was declared one of our country's 100 living national
treasures in 1997. Her books, especially "An Authentic Life",
seek to guide people to discover meaning and spirituality in everyday
life. Claire and I both read "An Authentic Life" within a few
months of Maggie's birth.
One wonderful concept she discussed that night was the need to
"harvest" our memories and "harvest" our life
experiences. Thinking about this, it occurred to me that this is what I
most want for Maggie and indeed for my other children. At the end of my
life, and hopefully at the end of my children's lives, it would be an
achievement if we can sit back and reflect on all our harvests. And during
our lives I am increasingly aware of the need to harvest our life
experiences, to truly know them. Our aim in this life should be to live a
life that allows us to reap many joyful harvests, yet at the same time to
realise there will be sorrowful ones too. This is a potential it is worth
striving to reach.
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CHAPTER 7 - GET ON WITH IT
The journey of a 1000 miles must begin with a single step.
Happiness is not a place to arrive at, but a manner of travelling.
Margaret Lee Rubeck
Life is what happens to you while your busy making other plans.
John Lennon "Beautiful Boy"
I first read the Chinese proverb quoted at the beginning of this
chapter in a desktop calendar. At work a few weeks after Maggie's birth I
was flicking through one. I generally check out the quotes for all our
birthdays and our wedding anniversary. The proverb above was the
"quote of the day" on the weekend that Maggie was born.
It became apparent early that we would embark on an enormous journey
with Maggie. In our naivety our initial thoughts of this journey were of
the trips to Sydney, over 400km away, for surgery and outpatient visits.
Some of our friends expected that we would relocate to Sydney, at least in
the short term, for Maggie's medical care. Within the first few weeks we
knew that Maggie would need major cranial surgery, cleft palate surgery
and perhaps up to four hand operations in the first year alone. The
thought of all the travel was daunting, the family upheaval and emotional
issues of caring for our daughter through all of this was almost
Our pragmatic selves instinctively told us that we just had to keep
moving forward. This is a simple concept but in those first few weeks our
lives had taken some giant steps backwards. In hindsight, these backward
steps just gave us a longer runway for when we started moving forwards,
gave us the ability to soar to heights we never knew existed. But not in
the way we had hoped might happen.
For all our combined medical knowledge we were quite naive. We thought
a few operations and Maggie would have a fairly normal looking head,
normal looking hands and be like all the other kids. Of course it could
never be that simple.
In the surgical sense our progress happened quickly. At about four
weeks of age Maggie attended the craniofacial clinic at New Children's
Hospital at Westmead in Sydney.
We are in the midst of the Liverpool Ranges. We left Tamworth at about
3pm, just after school finished, to get as much of the trip underway
before dark. The Liverpool ranges are an incredibly scenic part of the
drive to Sydney. James and Lizzy are not yet sufficiently bored to be
making the trip difficult. Maggie is asleep. The sun is setting on the
ranges. Setting too, perhaps, on the beginning of our journey. Today's
journey is one more of discovery than anything else. Soon there will be a
journey of apprehension and trepidation. But I am ahead of myself. One day
at a time. One journey at a time.
Professorial clinics are generally busy places. Maggie's referral had
not been forwarded and the receptionists and nurses thought it better to
re-book us. We let them know how far we had travelled and the nature of
Maggie's problem and they organised to fit us in. I had to write the
We sat in the waiting room looking to see if there was anyone else with
Apert syndrome there. There was no-one we could identify as such. I think
we were secretly hoping to see a fairly normal looking child with webbed
toes that had been sculpted to physical perfection. What we probably
didn't see were inspirational people who were further along their journey
than we were. We hadn't developed our sixth sense yet.
When we finally met professor Poole it was with a cast of thousands. Dr
Van der Voord another plastic surgeon was there, there were geneticists,
speech therapists and a dozen or so medical students.
Two things about our first meeting with Professor Poole stick clearly
in my mind. The first one was that everyone in the room treated Maggie
like a baby girl. Maggie had a syndrome, she wasn't one. In time to come I
would appreciate this more and more. At first I would look at Maggie and
see Apert syndrome. It sounds terrible to say, but that is the reality,
and I think that is true for many people, at least initially. Eventually I
would look at Maggie and see a beautiful and magnificent child. I can't
remember the specifics, but I recall a disabled person once saying that
her disability was a characteristic of her, it didn't define her. These
words stuck in my mind. It is important to see things holistically.
The second thing was his open and frank honesty. After an exchange of
greetings, he said, "she'll always look different." There it
was, no ambiguity, no false hope. He discussed that she was probably at
the better end of the spectrum and gave us information about the need for
CT scans, early surgery, mental development and so on. He told us too that
this was probably the best Maggie would ever look. Claire and I instantly
liked and appreciated being told as it was and we left our first visit
feeling completely confident in Professor Poole and the unit. However he
was wrong about the "look". To my biased eye Maggie has indeed
become more beautiful as she has grown. Perhaps Professor Poole, with his
clinicians eyes, was looking at a static face with measurable contours,
angles and intra-orbital distances. I don't see this. With a father's eye,
I see a beaming smile, cheeks exploding with joy, mischievous grins and I
hear laughter that wells from somewhere deep in the soul.
After seeing Professor Poole, Dr Michael Tonkin a hand surgeon, came
down from theatres to see us before we left. When I was preparing for my
Emergency Medicine fellowship exam the year before, I attended a few of Dr
Tonkin's outpatient clinics in preparation. Like Professor Poole he was
informative and honest. He discussed at the first visit the differences in
an Apert hand to a normal hand and also the arguments for and against a
four versus a five fingered hand.
Both doctors were well aware of the impact that travel, and multiple
surgeries can have, and were keen to co-ordinate things to minimise this
impact. We left our first visit with a rough surgical plan for the year,
but still anxious to have everything done and finished with. We were
impatient for Maggie to be fixed up, what we didn't realise was that she
It took fourteen months for the first four operations to take place.
This was slower than we anticipated, but it was in these fourteen months
that we started to move forward spiritually. The time between operations
gave us a chance to know Maggie. We started off our journey knowing where
we wanted to go. A short way into the journey we discovered that we
couldn't go there, that Maggie wouldn't be converted into another Lizzy by
clever surgery. Nonetheless we then wanted to get Maggie to where she
could go as soon as possible. In those first fourteen months however we
learnt that the final destination is not what matters, it is the getting
there. We realised that we had to enjoy Maggie, to love her, to treasure
being with her, for Maggie to be another integral part of our family. This
was true for James and Lizzy too, who were simply besotted with her. We
knew that Maggie would need a lot of surgery but we gradually developed a
new perspective on life. The surgery would happen, it would be a bridge to
cross each time, but it was not something to dwell on. We had our lives
and our children to dwell on. We had a journey to enjoy.
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CHAPTER 8 - FAITH
If God did not exist it would be necessary to invent Him.
One of the first people I called on Sunday morning, the morning after
Maggie's birth, was Father Richard Gleeson. I told him that we had a new
baby girl and he sensed there were problems before I told him. Richard is
a magnificent priest. In a few short years he has developed the parish
community, from a strong base, into something even more substantial. His
work at St Nicholas and St Mary's schools has contributed enormously to
the faith of the children in our parish.
Richard came to see Claire and Maggie that morning. John and Mary
(Claire's parents) were with us. He read the Sunday readings and brought
us all communion, and said some relevant prayers. It was difficult not too
weep at times. I recall clearly that at one point he said, "Grace
will come - it always does." I can remember it as if he said it
yesterday. I must admit I couldn't see how it would come at the time. But
grace did come, in abundance.
Father Peter Dwyer as the hospital chaplain, came and saw us daily
while Claire and Maggie were still in hospital. He too has been of great
comfort and has had many wise words to say, some of which are in this
account. A few times his homilies I'm sure were written and spoken with
Maggie in mind. One of Father Peter's most memorable homilies occurred a
few days after a patient under my care in the Emergency department had
died. This gentleman aged in his fifties was brought in after having had a
cardiac arrest at home. The paramedics had worked on him and by the time
he arrived in hospital pretty much all that could be done, had already
been done, without success. One of the least enjoyable aspects of working
in Emergency medicine and intensive care is the breaking of bad news to
families. This proved no exception, and I learnt a little of this man's
life from his grieving relatives. On Sunday, I would learn a lot more. The
gentleman had had a fairly disabling injury some 20 or so years before and
had nearly died. From then on he became a different person. He lost all
interest in material things and money and spent the rest of his life
devoted to his extended family. By the way success is measured in our
secular society he was a complete failure. Yet, in the ways that really
matter, his life was full and rich.
The parish of St Nicholas was incredibly supportive of us when Maggie
was first born. There was genuine concern for Maggie and even people we
barely knew took a keen interest. Maggie became a part of the parish life
and with time I would learn just how many people were taking a keen
interest in Maggie, some from up close others from a distance. One of my
fondest stories was relayed to me by Father Richard. In the early months
of the year 2000 Father Richard asked many different parishioners and
parish groups about what the best things in the parish were in 1999. One
day he was asking a group of children. Some of them replied that the
children's mass was the best thing, others thought the cup of tea after
mass was the best (or at least the biscuits!) Yet one little girl, whom we
barely knew, said that she thought the best thing in our parish in 1999
During 1999 Maggie went to several masses and was anointed. We
generally timed these the week before her surgery and Father Richard
thought they were best incorporated into the class masses, where one or
two classes at the school celebrated mass. The children were very excited
to see this sacrament performed and amazed us with their well wishes and
promises that they would pray for Maggie during her surgery. Claire tried
to visit the classes after Maggie's surgery to provide them all an update
and to thank them for their prayers.
Alice Tate-Barnett, whose daughter Shirley has Apert syndrome, has also
found great comfort in her faith. Alice sent me a transcript of a
testimony she presented some years ago, and has kindly agreed to allow me
to reproduce it here.
The date was June 9th, 1993. The event was supposed to have been one of
the happiest and most joyous occasions of my life: the birth of my
Instead, my feelings of happiness, ecstasy and joy were replaced with
feelings of overwhelming disappointment, disbelief and helplessness. I
didn't birth the little girl I had carried in my mind for the past nine
months. The perfect and beautiful little baby who was to become my
treasured sister's namesake. I birthed a little girl with abnormalities.
At her birth, instead of the usual, "Congratulations." I
heard: "Didn't you have amniocentesis"?
My little girl's fingers were all fused together. My little girl's
toes were all fused together. My little girl's eyes were abnormally far
apart and droopy. My little girl's head was abnormally large. I was
stunned. I was shocked. I couldn't cry, at first. I could only stare
into my feelings of disbelief.
The next day a geneticist came to explain our little girl's condition
to us. It was called Apert Syndrome. In addition to the abnormalities
that were obvious, it entailed abnormalities of the skull. It was fused
where the usual soft spots are and therefore, would not give to
accommodate the growth of the brain. Her whole midface was affected. It
meant many surgeries, as many as 10-20 before she reached her teens. And
that was not all. There could be intellectual problems. For sure there
would be self-esteem problems. Our little girl would require extra
special love and emotional support.
My decision to have children had not come easily. I had always felt
so inadequate. How in the world would I be able to provide what children
need and deserve? Was I able to give so unselfishly, all that a child
had to have? Those questions I had asked myself over and over haunted me
now at the birth of my daughter. The doubts about motherhood that I had
were still with me. They had not completely diminished with the birth of
my son eighteen months previously. Now, not only was I the mother of
two, but I was called to be the mother of a "special needs
I truly felt inadequate now, so small, so much less than I knew I
would have to be. There was one thing that I was sure of: I was sure
that this was oh so much bigger than me! I knew I needed help and I
would need this help for the rest of my life. It was at this time that I
turned to God.
The next day Shirley and I were rushed out of the hospital. Shirley's
doctor wanted her to be seen by a neurosurgeon, as soon as possible.
After being seen by this doctor, we took Shirley home. We brought her
into the house and set her car seat, with her in it, on the floor.
Several family members were there and we all stood in a circle looking
sadly down at Shirley, everyone with long faces, and no-one saying a
word. All I could think was what in the world are we going to do with
her? That was the first question I had that God immediately answered for
me. My answer came through the actions of my eighteen-month-old son. It
was at that time that he walked over to Shirley and laid his little head
so lovingly against hers, and there was my answer: we are going to love
God has answered many of my questions since that time. He has also
provided me with the strength to endure eight surgeries with Shirley. I
have been able to hug her, hold her, sing to her and love her so very
deeply. I don't see Apert Syndrome when I look at my little girl now, as
I did the day I birthed her. I see Shirley. I see God's precious gift
that saved my life. For it was Shirley's birth that germinated the seed
of my relationship with God. Since that germination, my relationship
with God has grown slowly and wonderfully and joyously and I am so
thankful for the gift of everlasting life that God has offered to me
through the gift of my Shirley.
May God bless you all, the way He has blessed me! Much love,
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CHAPTER 9 - THE FIRST OPERATION
Faith is a bird that knows the dawn is about to break and starts
singing while it is still dark.
Old Scandinavian Proverb
Maggie was six months old when she had her first surgery. Although what
was to happen had been well explained to us it was not until it was over
that we realised the magnitude of a "posterior cranial release."
We left Tamworth and drove down with James and Lizzy.
…and here are the Liverpool Ranges again. This is the journey of
apprehension and trepidation. Since we last traveled this road we have
grown to know and love our daughter so much. We now know how much we have
Lizzie and James were excited, they always are when there is a visit to
the grandparents. John and Mary live only a few kilometers from The New
Children's Hospital. Their support through all of Maggie's surgeries made
everything so much easier. Claire and I could devote nearly all of our
time to Maggie, knowing that James and Lizzy were being entertained by
grandma and grandad. Their home, a familiar base, was a comfort during
Initially Maggie was admitted to an independent living unit. The plan
was to be there for three days and then move to another ward from where
she would be taken to theatre. We thought during those first three days
that Maggie would have sleep studies and a whole assortment of tests, but
nothing much seemed to happen. Claire stayed with Maggie, in their own
little self-contained room. It would have made a good holiday flat.
Eventually Maggie had a chest x-ray, some blood tests and had her hands
photographed, all of which could have been done as an outpatient.
Friday came around soon enough. It had only been in the last two months
that Maggie had really started to develop. She was consistently putting on
weight, was becoming more interactive and starting to develop the sweetest
disposition, a personality that would forever warm our hearts. It seemed
unfair that at a time of such rapid development she was to be subject to
such a major operation.
When walking from Maggie's room to the operating theatre I recall
wondering if prisoners walking to their execution felt this way. It seems
nonsensical now, but the apprehension, and the risk of losing one who was
so precious was real.
Claire was allowed to go in with Maggie for the induction of the
anaesthetic. I, the dutiful father waited outside. Claire was back with me
soon. We had a cup of coffee, chatted nervously and got ready for the long
haul in our own separate ways.
Our expectation was that the surgery would take about six hours. There
was a chance, depending on how things went that Maggie would be
transferred from theatre to intensive care and put on a ventilator
(breathing machine) overnight. Claire returned to her room, slipped into
her running shoes and headed off for a run around Parramatta Park. It was
a warm January day, but rain fell steadily for most of the morning. I on
the other hand bought a variety of newspapers and set myself up in the
waiting room outside recovery. We didn't expect to hear much for a few
I read nervously for a while. I was well aware that right now Masses
and Rosaries were being said for Maggie, all over the world. Claire's Aunt
Dolly, a sister in Wolverhampton, England, had organised for mass to be
said there. The sisters were then to pray the rosary for Maggie. Dolly had
also organised a mass in India, where she was brought up. Dolly, when she
first heard news of Maggie's birth, was overcome with joy. Without the
slightest doubt, her view was that Maggie was blessed to have been born
with her cross to bear.
Nick Ryan, a fellow emergency physician at Tamworth told me that his
parents had arranged for a rosary to be said in their home town of Orange.
His wife, Maria, told us that her parents had arranged a rosary to be said
for Maggie in Bendigo. Masses were also said in Tamworth and a variety of
churches in Sydney. A group of friends in Tamworth also got together to
pray the rosary for Maggie. It was a comfort to know that so many prayers
were being said for our daughter.
After about an hour and a half a man appeared at the door asking for Mr
or Mrs Doherty. I was shocked, this was far too soon. The gentleman
introduced himself as Dr Besler, he was a professor of neurosurgery. The
neurosurgeon. I'd forgotten the neurosurgeon! He wasn't at the clinic when
Maggie visited. He explained that his role was over. His job was to
separate the sutures at the back of Maggie's skull and to free the bone
from the cavernous sinus, which is a large blood vessel transporting blood
away from the brain on its trip back to the heart. He reassured me that
everything was going fine and didn't expect that they would be much
Claire returned not too much later, I gave her the news. Her run had
been a meditation of its own. It was raining heavily and during her run
she had seen an aboriginal man dart at great speed out of Cumberland
Psychiatric hospital, which neighbours the Children's Hospital. Uncertain
of what he was doing, Claire watched. He ran to a stalled car in which a
business woman was in and pushed it off the road for her. A simple man,
dressed poorly and not even owning a pair of shoes. Yet in his heart he
saw the need to help this woman whose car had stalled. Many motorists,
well dressed men in suits, people considered successful by the parameters
we use in society today, all drove past. No-one stopped to help but this
Further on in her run Claire was praying for Maggie. She relayed the
story to me of a vision that formed in her mind. Essentially Claire saw
that Maggie was God's child, we were but his custodians on Earth. But the
view she had was of all these clever people, huddled around a tiny baby.
The baby, well she was being held in the Lord's Arms. Could there be any
Within three hours of going in for surgery we were by Maggie's bedside.
Maggie was half on her left hand side, with her back towards me. When I
reached the cot I looked down and saw Lizzy. Nothing had been done to
Maggie's face, the surgery was all on the posterior skull, to give the
brain room to grow. Yet somehow Maggie looked like Lizzie at a similar
…and Lizzie lay there. We are in Sydney for a year to complete my
training. Claire took James and Lizzy to visit their Picton cousin one day
last week. While walking by the river Lizzie slipped and broke her femur
(thigh bone). The largest bone in her body snapped like a matchstick.
Lizzy has been in New Childrens Hospital for a week now. She was in
Gallow's traction initially and being wheeled about in this contraption
has earnt her no end of symapthy. In theatre today she has had her
fracture set in a hip spica, plaster from nipples to toes. She will stay
in this for five more weeks. A week in hospital has been enough for all of
us, especially Claire who has stayed most nights. I stayed the others. We
will leave tomorrow and hopefully never need to use this magnificent
Maggie had a gauze bandage from ear to ear, covering a thin strip where
her hair had been shaved and the incision made. She was still fairly
sleepy and on a morphine infusion. The operation involves incising from
ear to ear. The skin is then peeled down, much like a banana skin I dare
say, and the skull bone exposed. The occipital bone, which is the bone at
the back of the skull is then exposed and subsequently cut out. I
understand that the neurosurgeon does this part of the operation. After
this, little wedges are cut into the removed bone and its shape is
altered. The human equivalent of panel beating! A bridge of dissolvable
material then attatches this reshaped bone to the existing skull. New bone
grows into this bridge.
Professor Poole came and spoke to us a little later. The operation had
gone well he told us. Maggie had needed a blood transfusion of roughly one
and a half times her entire blood volume!
Incredibly Maggie was just about back to herself within about 36 hours.
Her first smile after the operation was my cue that she had turned the
corner. In all subsequent operations, that first smile has been an immense
comfort. Maggie was allowed home within four days, but because of the
surgery to the back of her skull, couldn't travel in a baby capsule. We
therefore made arrangements for Claire and Maggie to fly home.
On the appointed day Claire traveled from the New Children's hospital
to the airport by public transport. At that time there was still no rail
connection between Central station and the airport, so Claire needed to
take a bus. Claire had her backpack, a baby with a strip of hair and a
scar across the top of her head, from ear to ear, and had to carry the
breast pump. It didn't take much for people to realize that this was a
little unusual! Indeed one lady, with an American accent noticed the
breast pump, and the scars. In her broad American accent she asked Claire,
"Is that your baby's ventilator?"
Eventually we were all re-united again and there was a great sense of
relief that this operation was behind us.
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CHAPTER 10 - THE GETTING OF WISDOM
Wisdom is the principal thing; therefore get wisdom: and with thy
getting get understanding.
Proverbs, iv, 7
Apert syndrome is named after Eugene Apert, a distinguished French
paediatrician, who was born in Paris in 1868. He entered the faculty of
medicine and commenced medical practice in 1893 before gaining a doctorate
in 1897. Apert was attracted to the specialty of paediatrics, and
published on retarded children in 1902. In 1906 Apert reported nine
children with craniofacial abnormalities and digital fusion under the
title " De l'acrocephalosyndactylie". Though not the first to
describe the syndrome, it has borne his name ever since. He continued to
publish widely on hereditary conditions and disorders of growth and
development. A 1913 manual on child rearing made him the French equivalent
of America's Dr Spock.
After serving in the First World War he received a senior appointment
at l'hopital des Enfants-malades where he remained until his retirement.
The basic characteristic of Apert syndrome is that it affects
development of the musculoskeletal system. It especially, but not
exclusively, affects bone growth. The characteristic features of a child
with Apert syndrome include cranioynostosis (or premature fusion of the
bones of the skull), midface hypoplasia (decreased growth of the middle of
the face) and syndactyly (fusing together) of the fingers and toes. Other
bones can be involved, as can other organs, especially the heart and
urogenital (bladder, kidneys and reproductive) organs.
The fusion of the skull bones produces a skull which is narrow and
which has a large central fontanelle (soft spot). Uncorrected the only way
for the brain to grow is upwards, since the skull bones cannot grow
outwards, backwards or forwards.
The facial bones also fuse which gives rise to the appearance of
depressed cheek bones, and a fairly flat looking facial appearance. Other
characteristic facial features include a depressed bridge of the nose,
wider than normal separation of the eyes, shallow orbits which give the
appearance of bulging eyes, a tendency to large ears, a trapezoidal mouth
and a short bulbous nose. Maggie has a short bulbous nose and I must say
it is incredibly cute!
The abnormality that causes this is on a gene known as fibroblastic growth
factor receptor 2 (FGFR2) that is on chromosome 10. FGFR2 is known to play
an important role in normal vertebrate development, and mutations of this
gene are associated with a number of conditions such as Apert, Crouzon and
Pfeiffer syndrome. The "mutation" (a terrible word) is simply
two proteins, usually cytosine and guanine, which are basic building
blocks of DNA, swapping places.
The phenotype (or physical affects) of Apert syndrome, as I understand
it, can vary for an identical genotype. That is if a person with Apert
syndrome has a child with Apert syndrome (and hence almost certainly the
identical genetic defect of FGFR2) the degree of skull and hand and foot
involvement, amongst other things, may be quite different.
These children are faced with a number of problems.
The skull fusion requires early surgery to allow the rapidly growing
brain, room to grow. If the midface is affected badly enough, or if things
like tonsils and adenoids are causing problems, then the airway and
breathing can be compromised. Many children need tracheostomies to help
them breathe more easily. Other children have their palate split to
facilitate their breathing.
If a cleft palate is present, as Maggie had, then this will need to be
corrected at some point. The palate is involved in opening the Eustacean
tubes, which drain fluid from the middle ear. Failure of this can result
in fluid staying in the middle ear and diminished hearing. Combined with a
cleft palate this causes obvious difficulties with speech development.
The shallow orbits can result in a squint which means that the eyes
don't move together as a pair. Maggie has had this problem and has had
careful surveillance form birth.
The hands need correction. Each digit is generally a bone short, that
is, there are only two bones in each finger and one bone in the thumb. The
joints in the fingers are flat ended rather than rounded and there are no
tendons associated with the joint and as such the joint cannot bend. Then
there are varying degrees of bones being fused together. Maggie had her
middle and ring finger tips fused together on each hand. In addition her
little and ring metacarpals (the bones in the hand itself) were fused
together. For us the most important thing with Maggie's hands were that
they become functional. She had a possibility of having a four-fingered
hand (plus a thumb). It was a weigh up between having enough skin to do
the grafting and sufficient blood supply for all fingers to survive.
Another factor was that three Apert fingers may in fact look more normal,
and more importantly in Maggie's case, may be more functional than four
fingers. The extra space in a three-fingered hand (remembering that the
fingers are effectively stiff) may indeed make it more functional.
The feet in general are left alone, and as yet we have not pursued
Maggie's feet problems. Claire will no doubt use her physiotherapy
expertise at the appropriate time!
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CHAPTER 11 - THE PROBLEM WITH WISDOM
In much wisdom is much grief. He that increaseth knowledge
Ecc i, 8
The wisdom that our family has gained through Maggie is not medical
wisdom. Understanding that Apert syndrome occurs usually due to a
spontaneous translocation on the short arm of chromosome 10, is medical
knowledge, but this is not the wisdom that Maggie has given us. Maggie has
taken love and added a whole new dimension to it. It seems strange that it
takes a seemingly adverse event to develop one's character further. We
started off thinking that Maggie would change our lives dramatically. We
envisaged a disabled child who would limit what we could do. A child that
would consume our time, take us away from our other children, take us away
from the life we knew. The gift of Maggie was a child that consumed not
only our time but our souls, a child that drew us closer not only to our
children but to each other, a child that gave us empathy and understanding
on a scale we had never known, a child that so enriched our lives that
life would seem so hollow without her.
The wisdom we have gained from Maggie is an insight and an
understanding of how extensive and how precious life is. Vincent Van Gogh
once wrote, "…at one stage the Earth was supposed to be flat. Well,
so it is, even today from Paris to Asnieres. But that fact doesn't prevent
science from proving that the earth as a whole is spherical. We are still
at the stage of believing that life itself is flat, the distance from
birth to death. Yet the probability is that life, too, is spherical, and
much more extensive and capacious than the hemisphere we know."
Maggie has helped us lift ourselves up to see over horizons and to
experience life at a whole new level. It is an intangible thing.
The impact of Maggie is obviously similar to the impact children with
similar disabilities can have on their families. The Apert list server is
full of inspirational stories and inspirational people.
Betsy Bathrick of New York lost her son, Griffin, after cranial
surgery. Griffin was only two years old. I have with Betsy's permission
included an e-mail she posted on the list server after Griffin's loss. I
think Betsy's words speak for themselves and highlight the problem with
"Hello everyone. I would first like to thank everyone for your
thoughts and prayers. Griffin (2 years old with Aperts and hypotonia)
went in for surgery on Wednesday. The surgery took longer than expected
(don't they always). Instead of six hours it took 10. They did a cranial
vault reconstruction, for which they had to take parts of three ribs.
Everything went great. They had him on Propofol (I think) to keep him
under because he was on the ventilator and they didn't want him to wake
up and pull it out.
Wednesday night, Thursday and Friday morning everything was going
great. All the doctors kept saying how great his numbers were. Friday
afternoon they began to notice he was looking pale. They took him off of
the propofol and he wasn't waking up whereas before when they would
check and see how he was doing he would wake up in minutes. That's one
of the reasons they use propofol because you wake up so quickly. They
did a cat scan and it showed nothing. To make a long story short the
doctors couldn't quite figure out what was going on. I heard them kind
of arguing with one another because they couldn't quite figure out what
was going on with him. The attending doctor in the paediatric intensive
care said he thought Griffin was having a reaction to the Propofol,
something called Malignant Hyperthermia
They let me stay the entire time until the end. He died 9:15 am
Saturday morning. I don't even think the doctors thought he was going to
die. At four in the morning they were talking about what to watch out
for at the next surgery. After he died everyone just kept looking at one
another like what happened. I was at the hospital by myself and I think
part of me just kept thinking he was going to be alright. This was just
one of those things Griffin does to scare us. He had a cat scan done the
Monday before the surgery and had stopped breathing for a little bit.
That was just Griffin.
Some of you have asked me about the drug he was on. The doctor told
me Propofol has been on the market for 8 years and this is like only the
third or fourth death from it. He told us the odds of this are one in a
million. Griffin had the best odds first with the Apert's then with
this. My family and I are having a hard time dealing with this. I have 5
other boys they're having a hard time understanding why he was taken
away from us. When I first had Griffin I kept saying why me and how
unlucky I was. Then I felt very lucky having Griffin. He was the best
kid in the world. He just really enjoyed life. Whenever I felt down or
sad he would just have to look at me to make everything all right. I
want to thank everyone again for your thoughts and prayers"
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CHAPTER 12 - FOUR INTO THREE WONT GO
even for the squarest peg, the right hole may ultimately be found;
seeming unfitness prove to be only another aspect of a peculiar and
Henry Handel Richardson, The Getting of Wisdom.
"..those people, eating their potatoes in the lamplight have
dug the earth with those very hands they put in the dish…"
Vincent Van Gogh
These words by Van Gogh were written to his brother Theo, about his
first masterpiece, "The Potato Eaters" is a rather apt quote to
introduce this chapter. To Van Gogh the hands of these peasants may well
have been a thing of beauty, yet, as with all his art, especially when
sketching or painting peasants, he aimed to catch the reality of life. In
the peasants he sought to capture the brutal harshness of their existence.
Still, he sought perfection in what he painted or sketched. For this
painting he sketched many sets of hands to perfect the form and symmetry.
The hands of the peasants, as with the peasants themselves, have an
intrinsic beauty. I'm sure Van Gogh would have seen the intrinsic beauty
in an apert hand whether it had three, four or five fingers, or even
before the digits were separated. Yet in his letter to his brother, having
devoted so much time to perfecting these hands, and having captured their
harsh yet real beauty, he writes of the functionality of the hand. The
hand, whatever else it may be, is first and foremost functional.
We travelled back to the New Children's hospital in March, when Maggie
was eight months old, for her first hand surgery. We were still uncertain
as to whether or not Maggie would have a three or four fingered hand. She
was admitted on the Thursday evening for surgery the following morning. We
noticed on the way down that she was running a temperature. Generally
Maggie looked well and was eating, but nonetheless she was febrile.
The anaesthetist saw her the following morning and she remained
febrile. After examining her it was decided to review her again in an hour
and make a decision then. When the hour was up, the anesthetists returned
and Maggie was having the time of her life splashing around in the bath.
After deciding there was no sinister cause for her fever the operation
We again spoke to Dr Tonkin before the operation. Our hope was that
Maggie would have four fingers, but we understood that this may not be the
case. Claire again donned the blue theatre gown and went with Maggie
during the induction of anaesthesia. From their our parental operating
routine followed its normal course. I would supply myself with coffee and
papers and wait in the waiting room. Claire would don her running gear and
run around Parramatta Park.
James is eight maybe nine months old. He is certainly sitting
independently. What did Claire and I do before we had him. At home now we
spend a lot of time just watching him, his antics, his play. He is very
funny. On this day he is sitting on the couch, looking at us. Then he
looks down and grabs his feet. A look of total and utter surprise
overcomes him. Has he never noticed these before? What are they? He is
During her run this time Claire prayed, and meditated on the operation.
She told me when she returned that she had visualised all these clever
surgeons huddled around a tiny hand, covered in green sterile drapes. A
theatre full of people, all trying to give Maggie some fingers. As always
Maggie was not on an operating table but cradled in the arms of Our Lord.
It became apparent to Claire during her run that Maggie would have only
three fingers and a thumb. Somehow I knew this too.
When Dr Tonkin saw us after the operation he told us all had gone well.
It was no surprise when he said that he had to amputate the ring finger.
What was a surprise, and a wondrous surprise, was to see the tips of
Maggie's fingers poking out the end of her cast. We could see her nail
beds, beautifully formed. After we told James and Lizzy about the
operation, James came up with another pearl of wisdom. "If she hasn't
got a ring finger what's she going to do when she gets married?"
The plan was to go home the following day but Maggie became very
febrile and was vomiting. It became apparent that she had a gut infection,
which settled soon enough. Then it was home to Tamworth.
Two weeks later we flew back to Sydney for the removal of the plaster.
The grafts had taken well, and Maggie needed frequent dressings, done in
the burns unit of Tamworth Base Hospital, for a couple of more weeks.
Maggie hated the dressings, they were clearly painful. Yet she was brave
about them. I thought after a couple of visits she would start to cry when
we pushed the elevator button to go to the burns unit, but she never did.
It wasn't until the dressings were taken that she would start to cry. And
when they had been redressed she was back to her old self. No grudges!
In May she had her left hand operated on and it was basically a carbon
copy of the first without the fever. For many months Maggie's hands
remained very sensitive. Maggie never liked her hands being touched, long
after they had healed. Though this too has now changed.
It was also quite amazing how quickly Maggie started to use her hands.
Logic told us that a baby in utero can move its hands many months before
it is born. Even at this stage the brain is laying down a "motor
pattern" to control finger movement. Maggie was 8 months old before
she had her first hand surgery, eight more months without the brain
developing a pattern for finger movement. Yet once those fingers were free
they started to move, and Maggie's brain was laying down its own unique
motor pattern to control her fingers.
The hand surgeries were in many ways the easiest of the year. Clearly
the posterior cranial release was a major operation. The hand surgery was
obviously intricate, took longer than the head surgery, but for us hand
surgery was much less a threat to Maggie than the cranial surgery. For me
though, the operation I had been dreading was the cleft palate repair.
Apert syndrome, by virtue of the failure of the mid-face to grow,
results in the airway being narrow. Indeed some children with Apert
syndrome have their palate split to improve their airway. From early on I
was worried about Maggie's palate being repaired. From our perspective,
Maggie had no breathing problems. Would repairing the hole in her palate
cause her to have more difficulty breathing?
As operations go, this was Maggie's quickest, and indeed her cleft
palate was only fairly small. Yet on the first night after the operation
Maggie had lots of trouble breathing. She had nasopharyngeal airways, or
soft plastic tubes, in each nostril. These extended to the back of her
throat. So small were Maggie's nasal passages that the tubes she had in
would fit newborns, and at that stage Maggie was 14-months old. These
tubes probably blocked up, with blood clot and secretions, fairly early.
Although Maggie was in an area where she could be watched closely, for the
first time in our hospital experience, we didn't have a lot of confidence
with the staff on duty. An anaesthetic registrar saw Maggie and was not
too perturbed. Claire was very concerned and at about 9pm called me back
into the hospital. Maggie was struggling, breathing very fast, and working
very hard. Claire had the task of sucking down the nasal tubes and at
times this seemed to make a difference. To me it made sense that Maggie
would have trouble breathing. Her nasal passages were probably blocked and
of course there would be swelling from the surgery. My main concern was
that her oxygen saturations would drop. This wasn't due to the machine.
Generally with airway obstruction the oxygen saturation dropping is a late
Whilst Maggie was struggling my impression was that she had a lot of
reserve. Claire diligently changed her position and sucked out the nasal
tubes all of which seemed to help. We decided that I would stay, just in
case a problem arose. Emergency Physicians by nature of their work assess
and look after airways all the time. Though a narrow airway in a child,
especially your own, is not something many of us would want to look after.
The anaesthetic registrar did come around a check Maggie through the
night. Claire didn't sleep at all.
Professor Poole was in at about six am. He removed the nasal tubes and
Maggie seemed better after that. She breathed a bit more noisily than
normal for a few days but otherwise settled down.
When it came time to leave we took with us the little green, ceramic
frog Father Richard had given us before Maggie's surgery. He was given a
little green frog before he said his first mass, and so this in a way was
a "good luck charm." When we went to theatre with Maggie before
the palate surgery, I noticed in the garden, outside the theatre window, a
green, ceramic frog. It was larger than Maggie's.
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CHAPTER 13 - JAMES AND LIZZY
"Our baby's good now, he's not in a box any more."
Anastasia Wall aged 4, July 12, 1998
"Ours isn't, she's got duck's feet!" James, aged 6, in reply.
" When you are sorrowful, look again in your heart, and you
shall see that in truth you are weeping for that which has been your
Kahlil Gibran The Prophet
"You're children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you."
Kahlil Gibran The Prophet
Like most parents, I am sure, Claire and I are biased about our
children. James' birth was one of the most momentous occasions of our
lives. The birth of your first child is difficult to put into words, and
it without doubt leads to a profound change in attitude. A newborn makes
one reflect on what really matters in life. Your first child is for many
people I am sure, their first introduction to unconditional love. Lizzy's
birth was equally momentous and I think a second child made us feel more
like a family.
Claire had wondered how another child could possibly compare with James
and Lizzy. In our eyes they were so perfect, even if at times they did
drive us mad! It was already going to be an uphill battle for Maggie
before she was born. Yet Maggie has proved to be so magnificent, Claire
and I now wonder how James and Lizzy can compete with her! Of course they
don't have to compete with her. When Maggie was a few days old I recall
telling James that only one in 100 000 children have Apert syndrome. His
reply captures the beautiful innocence of children, "aren't we lucky
we got her." He is right, we must embrace life as the gift it is and
move forwards. But Maggie too, is also lucky to have James and Lizzy. They
adore her. It is not only us that Maggie has brought so much joy to, and
to see that joy in others, especially your own children, is a precious
So many of our friends' children also take great interest in Maggie.
This network of friends I am sure will stand Maggie in good stead and give
her greater confidence in later life. Amongst our closest friends are
Robert and Andrea Bruno. They have seven children ranging in age from 13
to 2. The twins, Claudia and Felix aged five, are besotted with Maggie.
Claudia always plays with her and Felix spent about three months teaching
her to whistle! By the age of 15 months Maggie could whistle quite well!
Mia Bruno is the same age and great friends with James, and like all the
Brunos is very protective of Maggie. Indeed in the days after Maggie's
hand surgery Mia was insistent that she too had been born with her fingers
joined together, and had needed them to be separated by surgery.
One of the advantages of living in rural centre like Tamworth is that
you can escape the city clutter. Many places are a comfortable walk. All
our children have covered vast tracks of Tamworth on foot. When very young
they travel in a front pouch, then graduate to a back-pack, then pram, and
then they walk for themselves. Because of this Maggie is well known around
town. Within our parish and the school communities Maggie is almost a
celebrity. She has touched people in so many ways. Importantly she is well
known to many children. Many of the children at St Nicholas' school find
her very cute and often ask of her. The anointings and the school masses
have no doubt contributed to this. At any gathering there are lots of
children huddled around Maggie playing with her. This in part I am sure
relates to her very outgoing nature. Maggie is always smiling and has so
many amusing mannerisms, you cannot help be charmed by her.
As mentioned earlier Maggie has also participated in a number of school
masses. Before each of her four operations (to date) she has gone to the
class mass (a different class each time) and had "anointing of the
sick" at that mass. This creates a lot of interest for the children
and many of them tell us they will pray for Maggie during her operation.
After the operations Claire has taken Maggie back to the class to thank
them and let them know how she got on. This is a very powerful thing for
primary and infant school children to be exposed to.
Whilst on the whole Maggie is well accepted by children and most
questions, mainly about her toes and fingers, are genuine curiosity, there
have been a couple of occasions when children have been getting a bit too
inquisitive. Whilst I can't recall any nasty comments or incidents, on a
number of occasions some children have started to go a little too far. On
one of these occasions, after an end of year school mass, Mia Bruno sensed
something was going on. Claire was diplomatically fending off a barrage of
questions from a seven-year old boy when Mia came up and said,
"Maggie's just the best!" That ended the inquisition, Mia had
set him straight.
For some reason this account of Maggie would not be complete without
including a section on Joseph O'Halloran. Joseph's life and tragic death
touched only briefly with Maggie. I remember speaking to Father Richard a
few days after Joseph's death and he said the same words he uttered to me
after Maggie was born, "grace would come." If any grace has come
from Joseph's death, it is that a whole community of people has learned to
really treasure that which is their delight.
From when Maggie was very young Claire has also said how she feels that
Maggie, especially, is on loan to us. We all tend to think of our children
as our own. Maggie though, has taught us that our children are gifts.
Given to us to nurture.
Joseph was a delightful 7-year old boy who was in the same year at
school as James. He played soccer with James, in the team that I coached,
and also played Australian Rules Football with James. At times he would
have the bravado of the larrikin he was, and at other times he would
content himself perched on his mother's lap.
I wasn't on duty the evening that Joseph was tragically killed in a
pedestrian accident. Nick Ryan, who also knew Joseph's family, was the
emergency physician on duty at the time. Nick's wife Maria called me at
home. Claire was out shopping with James and Lizzie, I was at home with
Maggie. This was a devastating event. I went in to the hospital once
Claire returned home but Sue and Patrick, Joseph's parents, had already
left. I knelt down and held Joe's still warm hand. A crucifix was in his
We decided not to tell James that night. Many parents it seemed did the
same. Joe's best mate was Thomas Knight who lives four houses away from
us. James and Joe got on very well and whilst James was upset, I think he
was still relatively protected by his age. I don't think initially that
any of the kids fully understood the finality of it all. It was apparent
many months later that James had taken in a lot more than it seemed. He
would often spontaneously say he wished Joseph hadn't died. In November we
were getting ready to go to the East Tamworth school fete. The kids
normally love these but James was not all that keen to go. Over a few days
we managed to extract out the reason. The last fete he had been to was the
St Mary's fireworks in May. He and Joe had spent the entire fete playing
together. James had bought Joseph a toffee apple and Joe had bought James
a glow stick. They were as James said, "becoming best friends."
It is the day after Joseph's death. Soccer training has been cancelled
but we have invited the players to our house. Most of them have come,
bringing their siblings with them. The kids have been playing happily most
of the afternoon. I notice James, Jack Rixon, Thomas Knight and Mia Bruno
sitting down talking to each other. Around them children are playing
frenetically. It is a poignant sight.
There were a number of marks of respect paid for Joseph. The following
weekend a minutes silence was held at the Aussie Rules and all players
wore black armbands. Our soccer team did not play for a fortnight but
again we observed a minutes silence and wore black armbands. Later in the
year I organised the Joseph O'Halloran Memorial Cup, an annual event
played between the two North Companions under 7 soccer teams. Our side won
3-0 with Thomas Knight scoring two goals. Sue, Joseph's mother, donated
perpetual trophies for the most enthusiastic player in our team.
Events such as these remind us of how precious our gift of life is. For
us, it reinforces how precious our children are.
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CHAPTER 14 - THE FUTURE
Now this is not the end. It is not even the beginning of the end.
But it is, perhaps, the end of the beginning.
I am in Grace Brothers with Maggie. Claire and Lizzy have gone ahead to
the cafeteria. Maggie is running after them excited. I trail them all. I
can't see Maggie's face but I know she is smiling, she always is. From
behind, her run is very amusing. A cross between a run and a waddle, with
the prospect of lunch making her arms flap with excitement. A man, in his
70s I guess, sees her from a distance, watches and smiles. He reaches his
hand out to her, but as she gets closer, his face changes. He has noticed
something. His hand is withdrawn. Maggie stops, looks at him and waves.
Smiles. He smiles back at her and smiles as she runs off. I pass him,
smile and say" hello". I wonder why the hesitation. A man his
age must have experienced so much, must have faced so many challenges. Yet
he instinctively was wary.
At a soccer carnival when Maggie was about 22 months old I was coaching
the under 8s and Claire was coaching the under 6s. There was a lot of
darting about from match to match. Our team had all their games on the one
field so we picked our spot for the day and based ourselves there. Maggie
had a ball. She would wander from our spot to the sideline of the adjacent
field, saying "Allo" to everybody, completely confident in
herself. On a couple of occasions she climbed on to other people's fold up
chairs and sat amongst them. The funniest occasion was when she went and
sat at the sideline and watched a game (between complete strangers).
Maggie sat there clapping, which seemed to occur at random intervals
rather than following a particularly fine piece of play. Claire went to
get Maggie on one occasion, to take her over to another game. A man, no
doubt a parent of one of the players, was very well meaning and said to
Claire that Maggie was alright there and added that, "she'll have
enough of a struggle in life as it is." This well intentioned, but
misguided statement, really demonstrates how the grey zone that is life,
is often seen in black and white. The truth is we will all have enough of
a struggle in life, at some point. Maggie came into our world carrying a
cross, but we will all carry our own cross at some point. Maggie is the
most loving, sociable and happy child you could meet. Some people will
search and never find happiness or love or self esteem. Some people will
never be at peace with themselves and their lives, and may never even be
able to see hope or optimism for the future. These things I am sure are
far greater struggles than physical ailments.
Later that day in the carnival a young boy got hit in the face by the
ball, he fell to the ground crying loudly. I ran to him knelt down and
noticed a bracelet on his wrist with "diabetic" written on it.
His diabetes wasn't stopping him. He was in the thick of things. He too
had a cross to bear at a young age. A lifetime of injections. The prospect
of a whole spectrum of complications. It is tempting to compare disease to
see which is better or worse, or if you had to pick an illness what one
you would prefer. Yet none of this matters. The cross we will all
eventually carry, will be different for all of us. It doesn't matter what
it is. What does matter is how we respond to it, how we embrace it as part
of life, and how we move forwards.
The man was right. Maggie will have enough struggle in later life. Yet
if Maggie had been born with a perfect set of chromosomes, she still would
have a struggle in later life. I was going to write that even if Maggie
had been born with all the beauty and riches and grace the world has to
offer, even then she would face struggles in later life. But Maggie, you
see, was born with all the beauty and riches and grace the world has to
offer. In truth we all are, but we don't recognise true beauty, true
riches and true grace.
We have reached the end of a chapter in the life of Maggie, in the life
of all of us. Maggie's life stretches before her. We don't know how many
chapters or how many pages her life will span, nor do we know what will
come to be written on them. But on those blank pages I hope there will be
plenty written about joy and happiness and love. For certain there will be
pages tinged with sadness. But isn't this true for all of us. Perhaps this
is the greatest insight Maggie has given us, to take life as it comes.
Perhaps to change what we can change and to accept that which we cannot.
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It is winter 2000 and Claire has brought the girls to meet me for
lunch. They are all dressed warmly. Maggie, now two years old, is wearing
a dress and jumper. She runs excitedly up the ambulance ramp to meet me.
Lizzy and Maggie have arrived for lunch. Some dreams come true.