ANOTHER CHILD ?
Our first child, Jonathan was born in August 1997. About
an hour after his birth we were told that he had a cleft of the soft palate
which would require surgery. He failed to suck and as a result he was fed
by a naso-gastric tube. He remained in hospital for about 1 month during
which time he had an ultra scan on his brain and his chromosomes tested,
both tests appeared normal. We put his failure to suck as a result of his
cleft palate.
At about 3 months of age we were referred to an eye specialist who suggested
that he most probably had Moebius Syndrome. The following week he was given
a battery of tests in hospital, one of which was a video-fluoscopy, to determine
his swallowing reflex. He was found to have a swallowing delay of about 10
seconds which meant that he was at serious risk of aspirating if he was fed
orally. About 1 month later he was given his PEG, or g-tube in his stomach.
Before Jonathan was born my wife and I had wanted to have our children close
together so that they could grow up together. Jonathan's Moebius only
strengthened our resolve as we knew that, although we would give him as much
love as possible, we couldn't provide for all of his needs. We both enjoy
close sibling relationships and we wanted that for our children also. We
had been to genetic counselling which had confirmed that the was a very low
risk of Moebius occurring again, that cleft palate was a 1 in 40 chance,
and
that since we would never consider termination, to be positive and go
ahead.
We believe that God had something to do with our daughter
Emma's arrival. She was conceived the first month we had decided we wanted
more children. Jonathan was 8 months old. At 9 months of age Jonathan went
to The Royal Children's Hospital in Melbourne to have his palate repaired,
his eyes straightened and grommets put in his ears. It was a distressing
time for us all and we wondered if having another child so soon was a good
idea, but we knew Emma was on her way so we prayed that everything would
be o.k.
Now Jonathan is 2 years, 4 months and Emma is 11 months.
We marvel at how well they get along together. Having Emma has made us realise
that although Moebius is a big part of our lives, it does not have to dominate
everything that we do. Jonathan is so much more than a child with Moebius.
We celebrate his life and the things that he can do.
Getting back to feeding. My wife expressed breast milk
for 7 and a half months for Jonathan, and when we tried formula we found
that he was highly allergic to cows milk. He is still in a specialized formula
which contains no dairy products.
In September 1998, after another videofluroscopy, his
swallowing delay had improved to be about 2-3 seconds. By November '98 he
was taking 50ml orally. In March '99 he took his first full bottle orally,
( 200 ml) and by April '99 he had his first day without being tube fed. What
a glorious day that was!!!!!!
Now, Dec '99 he has all of his food orally, formula and
mashed veggies. His pediatrician says that his PEG might come out next year,
then we will throw a PEG PARTY !!!!
Well, please let me know how I can contribute to the web page.
(Psssst......You just did, Nick...and thank you.)
Have a blessed Christmas.
Regards,
Nick Greenwood.
ngwood@virtual.net.au |