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Vaughn was diagnosed originally at 28 weeks gestation as having Spina Bifida and Mecklegruebers Syndrome (sp ??). His outlook was to say the very least bleak. At best he would be a vegetable (doctors words not mine) and at worst he would die inuterine. I was told to go home and if the movements stopped for 24 hours to come back and they would induce me as the baby had died. 12 weeks to go and this to look forward to. I decided to change doctors and the prognosis was not as bleak, there were problems but to what extent we weren't sure.

I was booked in for a caesarian on Friday 21st January but this child was not waiting that extra day, he decided the 20th January would be a much better birthday. What should have been a fabulous experience was a nightmare. I couldn't give birth naturally that much we knew and of course it was a fast labour. My doctor arrived on time and Vaughn was born at 7:04am by caesarian, weighing 3lb 12oz.

We had medical people everywhere, my private intimate birth had turned into a circus. They were waiting to resuscitate him (on our orders), but once again this little boy showed them all.

Vaughn had a huge hole in the back of his head. No bone just a clear view to his brain (so I am told, I couldn't look). He had a fluid sack coming from the defect but thankfully no brain matter was in the fluid. He had bilateral talipes and these things around both his lower legs. He also had a toe nail missing making a funny toe. What was it ??? It took quite a while for us to get the whole answer but it was Amniotic Banding Sequence. It had caused all these problems, even the hole in his head.

We had never heard of amniotic banding. After the diagnosis we were told some awful stories about what amniotic banding can do and actually thought ourselves quite lucky.

Vaughn has had numerous operations to remove the banding from his legs and correct his talipes. His skull defect was closed on day 2 with skin grafts. His little head was like jelly for many months until the bone actually grafted itself. Again we were grateful no metal plate was needed. He still needs further operations to loosen the banding and will probably need to have a calf implant as his calf muscle on his left leg will not develop due to the damage. Vaughn is developmentally delayed but he is alive and that is more than anyone thought. He is improving every day and is a great delight.

It is hard work, Vaughn has numerous therapies to help his development. I work conventional therapies in with alternative therapies. We probably spend up to 3 hours a day, 5 days a week doing one therapy or another. I don't complain because every small difference it makes is a huge step in Vaughn's future.

Our family is small, Dad (Richard), Sister (Caitlyn - 11 years old) and me..Mum (Donna). We all help in different ways with Vaughn's development / therapies. Caitlyn even gives up playing with her friends if one of my volunteers can't make it to the after school therapy. We try to get people to treat Vaughn as a normal 5 year old, but this can be hard at times. He is behind in his learning and he is small, we treat him as a child, not as disabled. He is just slower at learning, he is not contagious, you can't catch Amniotic Banding or Brain Injury.

Vaughn is healthy and happy despite all he has been through in a few short years, and is making progress. This is more than the doctors gave us hope for. He should not be alive today, but is now starting to flourish.

If you wish to contact us about Vaughn's kind of Amniotic Banding please do so. tirari@hotmail.com