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
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
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.