Amy's Page

 

More pictures of Amy!  
Visit Ann & Howard's Apert Network

Kia ora and greetings to the International Apert Community - and thanks to Cathie and Don for setting up Teeter's Page and the Apert listserver so we have such a wonderful means of communication.

We were late starters to marriage and family, and following two miscarriages our third pregnancy was successful. After an uneventful and enjoyable pregnancy (ultrasounds showed nothing to cause concern) she was in no hurry to leave her cosy bed so 10 days past D-Day we proceeded with an induction. Unfortunately during monitoring it was discovered her heart rate was not returning to normal post-contraction and an emergency caesarean was performed. Amy Colleen Esler (ACE) was successfully produced on 27th February 1991, just two months short of Ann's 40th birthday. She weighed in at 2740gm and had an APGAR score of 8.10. We were a bit stunned to know that our baby was different from expectations, but relieved that she had arrived safely without any apparent health problems.

One advantage of being late starters is that our general practitioner was happy to leave our pregnancy to a specialist, and we had excellent care and attention at National Women's Hospital in Auckland, only 15 minutes from home. We were also fortunate that the paediatrician who attended the delivery immediately recognised that Amy had Apert Syndrome and was able to tell us a little about it.

One advantage of having a child with special needs is that you get to have your own room in the hospital ward - it is easier to deal with things away from curious eyes and ears.

During the next week every possible part of Amy was scanned, x-rayed and studied - a wonderful learning opportunity for the medical students and registrars. By the end of the week we had been visited by both the plastic surgeon and the neuro-surgeon and knew when Amy's first operation was booked.

The day we were discharged we were phoned by Ros, the mother of the only other child in Auckland at the time who had Apert Syndrome. Though it took Ann a couple of months to get back to her, it was a valuable meeting and allowed us to prepare for what was to come. She was also able to provide us with the first useful and parent-appropriate information we had received.

Amy's first operation was at the age of 10 weeks - release of coronal sutures and 1.5cm mid-face advancement. The sight of her lying like a porcelain doll in Critical Care with 11 tubes and wires coming from her tiny body will stay with us for a long time. We didn't believe them when they said we would be home at the end of the week. They were right.

For operations that was it for her first year and we spent the time getting to know our wee lass and finding out more about what we were to deal with. At the beginning of 1992 she started to stand at the sofa, supporting herself. A month later, on her first birthday, she was in hospital having her first foot operation, and that was the start of a very demanding year.

Amy's hands were mittens - no separate digits. At the time of her first hand operation at 15 months old she still had both legs in plaster. When she came out of theatre her thumbs had been released but she now had bi-lateral abdominal flaps (both hands sewn to her groin) - and there she stayed for the next three weeks, flat on her back with her legs elevated. We removed the leg plasters at the end of the first week.

We attached two colourful little windmills to Amy's pram and spent our time wandering around the hospital - the faster we went the better she liked it. Very tiring for us but she became frustrated when we had her in bed. The corridors had a long wavy rainbow with little characters peeping out from between the colours and she took great delight in finding them.

The next step was to release her hands from her groin - the flap was then attached to the next separation between the middle and third fingers. We stayed in hospital for another 3 1/2 weeks until they were healed enough for us to go home.

After that it took another five operations up until November 1995, but when she started our local school on 27 February 1996 Amy had 5 digits on each hand. (Children start school at the age of 5 in New Zealand.)

Though sewing both hands to her groin seemed an horrendous thing to do to a wee child, this procedure has left her with scars in her groin and up one side which will be concealed by clothing most of the time. The only other scar she has from this surgery is a patch off one forearm.

Her demeanour during all these hospitalisations never failed to amaze us. She was a bottom-shuffler, so the leg plasters were not a problem for her. She had had mittens from birth so bandaged hands were just bigger mittens than usual. She was an only child, so having all these people in hospital to take notice of her and for her to visit was social heaven - she would regularly bottom-shuffle up the ward to the big-boys' room where the music was playing. Even when she was flat on her back she was perky and laughed at everyone, and once her leg plasters were removed she used her feet to turn pages in books and pass things over her head to her Dad. The only time she was really distressed was when her wounds needed cleaning and unfortunately that was a regular occurrence.

We probably will never know what impact all this has had on her psyche, but what we have now is an intelligent, wonderfully warm and loving child who takes good care of her dolls (and Mum and Dad when they aren't well). The difference between her and other children of her age show in little ways like anaesthetising her dolls instead of putting them to bed. Her main wish after starting school in our New Zealand summer was to be able to wear jandals (thongs/flip-flops) - such a simple wish but so difficult to grant.

She's ahead in another area though - she lost her two bottom front teeth in September 1996 at the age of 5 1/2, and no-one else in her class had done that! Unfortunately she swallowed them so the Tooth Fairy didn't get a chance to buy them from her.

Amy remains an only child (not for want of our trying) so her family consists of Mum and Dad, dog Holly and cat Sagan. She also has doting paternal grandparents living 3k away. Socially she has blossomed since starting school and regularly has friends visiting or she visits them. She has swimming lessons once a week and has just started karate classes. Her school has a rich mix of cultures and she will truly be an "international child" as well as a New Zealander/Kiwi. Through our Apert Network and the Internet connections she will know she is not alone.

December 1996

November 1991, 9 months old

1993. Amy's room, painted by friends and family.

Howard, Ann, & Amy, Christmas 1993, Amy age 22 months

Christmas 1994 - Nearly 4 years old.
 

1997-2015 apert international, inc.
All photos and text are the property of the families represented and Apert International, Inc., and may not be used without their consent.