Hi Everyone,

Finally getting around to writing on this message board.

My husband, G, and I have a 4 year old son called H who was born with a rare chromosome abnormality. A small part of chromosome 16 is missing and this has meant multiple issues for him.

The first, and most dangerous, was Congenital Heart Disease, diagnosed at 3 weeks old (finally after being called an over protective first-time Mum by my GP and thanks to a supportive Health Visitor). We were told that his heart condition involved 7 different issues including Coarctation of the Aorta, VSD, ASD, double outlet right ventricle, Pulmonary Stenosis and Patent Ductus Arteriosis. These were corrected by heart bypass at a day under 4 weeks old. He was then left with a small VSD and slight coarctation (involving two later angioplasty's and another likely as a teenager).

The following weeks led to other problems including diagnosis of a hypoplastic left lung and severe reflux. The geneticists told us that the outlook was bleak with the chromosome abnormality and we should expect a child who needed 24 hour care for life. In reality H has global development delay of about 2 years although speech is absent at present. However, he is an active child who runs before walking, loves anything physical and enjoys puzzles or playing with cars/trains. Nothing like the 'cabbage' we were told to expect. He has just started Brooklands Special Needs School in Reigate, Surrey.

We are currently expecting our second son in November - a surprise package that has led to some worry due to problems with a CVS test down at Kings College and followed by an amniocentisis. However, the baby is said to be clear of all chromosome problems and should be ok. Still worrying though as anyone who has had another child after one with problems will understand.

If anyone would like to get in touch then please let us know or you can get extra details on the website my husband has put together - www.aboycalledalex.org.uk

Regards

I