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