Scott’s story began on 22nd January 1972, our 1st child. After a long labour Scott came into the world at Oxford Street Maternity Hospital in Liverpool weighing 9llb 13oz.
When Scott was born he was taken straight out of the delivery room and I never got to meet him for another 12 hours. Scott’s dad saw him first and was sent into the delivery room to try and explain to me that Scott had large birthmarks all on his body – we now know these were CMN.
On The day after Scott’s birth, he was taken to Alder Hey Children’s Hospital to remove a cyst from his back. A week later we were able to take him home. The doctors said they hadn’t seen anything like this. We were told once Scott reached the age of 5 they would try and do skin grafts if he had “enough good skin.”
Scott was a good baby, he smiled a lot. However, at 8 weeks old he had a convulsion so we took him to A&E. The convulsion was passed off as teething, but soon after he started having up to 12 convulsions a day. He was given medication to try and control them.
When Scott was 11 months old his head swelled and he needed a shunt fitted to control hydrocephalus. He spent his first and only Christmas in Alder Hey Children’s Hospital. Scott was never able to sit unaided, but he could hold objects.
Scott had his 1st Birthday at home and things seemed to improve, until one day he couldn’t hold anything anymore. We took him back to Alder Hey Children’s Hospital where he was admitted and then to the ward where staff knew him. On examination we were told these birthmarks were on his brain and spine. A week later, on 21st February 1973, age 13 months, Scott lost his battle.
Following a post-mortem it was found that the CMN on his brain and spine was cancerous. There was nothing more anyone could tell us and we left the hospital empty with no support. It was only in 1996, after reading Jodi’s story in the Liverpool Echo and meeting her family, that we got to understand a bit more about the condition. We then met Dr Kinsler in 2008 and from following the work of Caring Matters Now we are able to understand more.
We did have 2 more children and I was very worried that they too may be born with CMN. My 2 children didn’t have CMN and I now know it isn’t hereditary. We also now have 4 grandchildren too.
Scott would have just turned 50 and so I am really glad we can tell his story and his memory lives on.