|Hi, I was born on the 4th of July at Ata Rangi Maternity in Hastings
New Zealand. I was born with Apert Syndrome.
I am the youngest of three boys. My mum and Dad were expecting a
"healthy, normal" baby. Then I popped out. One of my brothers was there
with them and his main concern was that I came out backwards and that mum
had lost a lot of blood. (go figure). Mums reaction wasn't too good,
She thought I was ugly and handed me to my dad, who thought "this is our
son, and were going to love him just like the other two". Well within two
or so hours Mum had come round, and there was no way anyone was able to
take me away from her. We (mum and I) (oh by the way Mum is writing
this as I'm only 6) Mum and I spent two weeks in hospital, only cause I
wouldn't suck. But I had a cleft palate what did they expect...
I have a wonderful medical team they are like my second and third
family. I spent a lot of time in and out of hospital due to breathing
problems, I had a tracheotomy operation when I was 6months old and mum and
I spent a month in Auckland Starship Hospital. That was no fun for my mum
as I was just learning to say gandad. Then there was silence. I had the
tube in and out for four and a half years. I had a specking valve put on,
but after my first tube was removed for a couple of months then returned,
I couldn't tolerate it. But found a way to get my voice heard. I have
delayed speech now, but am fast catching up.
My Dad left when I was 8months old. which is sad for me as I don't know
him. (This is me in front with my mum and brother Jim. and my mums mates)
I have had lots and lots of love and support from my Mum, Grandparents
and family and friends. This includes the nursing staff at Hastings
hospital,and starship & kidsfirst. The doctors I have are so cool,
They tell mum how it is in plain english. To date I have had the
Forehead Advancement 10mths
Release of Index fingers/Straighten of thumbs 1yr3mths
Release of Middle/Ring fingers with bilateral groin flaps 1yr10mths
Cleft palate Repair 2yrs10mths
Tracheotomy Replaced 3yrs2mths
Distraction Osteogenesis-Facial Bones,1st stage. 3yrs8mths
Exploration of Osteotiomusa to Face & completion of
Removal of metalware & implantal of Resorbable Spacers.3yrs9mths
Tonsils/ paschal Adenoids out 6yrs1mth
This doesn't include sleepstudies/Laryngoscpys/Bronchoscopys or my
pulling the trachy out and having it put back or 3D CT/MRI scans done.
Anyway this is just a bit about me and when my Mum has finished sorting
my photos out you will be able to see what a blessing I turned out to be
for my Mum and brother/s.
Hope you enjoy reading about me and my family and about New Zealand as
we are a beautiful wee country.