Our Experience with Spina Bifida

For information on what Spina Bifida is and when it occurs please visit the NSW Spina Bifida Association Page

When we were expecting our second child in early 1989, neither of us had heard of spina bifida, or thought of it. Our niece had quite recently been diagnosed with cerebral palsy so we had some small experience of disability. From the very beginning of the pregnancy, I knew that there was "something wrong". To calm my "neurotic fears", I had a late scan (22 weeks) and a blood test. Both were fine, 'normal' even. My fears weren't calmed at all, and I voiced them to everyone I could get to listen!!

Jordan James Ball was born naturally at 6.40pm on the 21st April, 1989 after a normal labour. It was a wonderful moment, as our elder son's birth four years before had been a nightmare of pain and terror. Jordan had what we thought was a large blister on his back and I remember the midwife saying "Myleomeningycele" although I had no idea what she meant. Jordan was taken from us and examined and then given back to me to feed. Throughout the whole week, and, indeed, the first six months, our midwife, Carolyn Hastie, was a tower of strength. She advocated for us with countless doctors and other health professionals. It was due to her insistence that I got to spend that first night in bed with my newborn son, rather than have him isolated in the Special Care Nursery. His lesion was covered with a single layer of skin, very like the blister we had thought it was, and the doctor was worried I would split it open in the night. I will always remember Carolyn saying "Who has more vested in keeping it intact ? His mother or a nurse?" She won and I got 17 hours with my baby before he went to theatre.

His surgery lasted for a bit over four hours. As he had no sign of hydrocephalus, they did not insert a shunt but warned us that "everyone" needs a shunt and it was only a matter of time until Jordan needed one too. I remember thinking "Not my baby" (which I'm sure every mother thinks) but I was right. A week later when they finally, and reluctantly let us go home, Jordan still did not have a shunt. He did exhibit some signs of hydrocephalus about 20 hours after surgery, but they arrested of their own accord. Because of this, and in spite of not having needed a shunt, Jordan still has some of the problems associated with hydrocephalus.

Jordan first had urinary tract infections (UTI) when he was about 18 months old. By the time he was 3, his right kidney was showing cracks at ultrasound due to reflux, so we began to catheterise him 4 times a day. I have to admit, I was glad he's a boy - much easier to learn on a boy!!!! In January 2000, he had ACE surgery for bowel continence. Although the operation didn't go as well as planned, and we are still strugglng with the routine, we are all very glad that he had it done and can see what a great thing it will be for Jordan (when we get it worked out!!). Aside from these 'toilet' issues, we have got off pretty lightly. Jordan has some learning difficulties, mainly related to non-verbal learning and fine motor issues, but he is so determined and loves school and , this year, has a great teacher. His lesion has been diagnosed as L5/S1, but his functional level is a bit higher than this indicates. He was born with very severe talipes and had his feet splinted for about 6 months after birth. His feet are still a strange shape but they function pretty well aside from a low level of feeling which leads to stubbed toes and cuts.

Jordan has been, and continues to be, a source of joy and wonderment to us. His spirit and determination constantly amaze everyone around him. He may not have met his baby milestones within the 'normal' range, but he did meet them. He was late to sit up alone and crawled at 12 months. He took his first step alone at 20 months and walked unaided at 23 months. He walks 'funny' and his legs are very thin, having virtually no muscles ennervated , but he walks and even runs, he climbs everything and plays cricket for Charlestown Junior Cricket Club, without a 'runner', although he was offered one. He scored his first 2 runs a few weeks and the rejoicing still hasn't stopped. He goes horse riding with Riding for the Disabled, and has twice represented the region at the Royal Easter Show in Sydney. He wrote and published a book called The Boy With Spina Bifida when he was 7 years old and in second class. He has taught us all so much, that I could never regret him for even a minute - how could I?