I ink found out recently that October is Spina Bifida Awareness Month so before it’s over completely I wanted to write a post.
Before Zyma’s diagnosis I didn’t know much about spina bifida. My brother-in-law actually has it as well but it had never come up as a topic of conversation. He walks slowly and with a bit of a strange gait but he walks. I also had a cousin with spina bifida who died at 3 weeks old (before I was born – actually while my mum was pregnant with me). Here was a more severe case and I had always been told that if she had lived she would have been in a wheelchair. So the extent of my knowledge was that part of the back is open (spina bifida actually means “split spine”) and it affects mobility.
When Zyma was diagnosed we had various meetings with experts who explained all the various ways she could be impacted. Spina bifida is known as a snowflake condition because no two people have the exact same combination of issues even if their lesion (opening) is in the same place. It’s a neurological condition that potentially affects all the nerves below the lesion. In Zyma’s case that’s around L4, so as well as the legs that means the bladder and bowels. Digestion can be slowed and the kidneys may be affected. Without the operation before birth Zyma’s legs would have been entirely paralysed and she would have needed a wheelchair. Her hips wouldn’t have been affected though, so she would have been able to sit independently.
The other thing I didn’t know about spina bifida is that the spinal cord can actually be stuck at the bottom, known as tethering. This causes the brain to also be pulled down towards the neck, which blocks the ventricles and stops the brain fluid from draining as it should. This is one of the main causes of hydrocephalus, or water on the brain. Babies who are born with this have to have a shunt – or drainage tube – fitted within a few days of birth. The other end generally drains into the abdomen. After Z’s diagnosis I found out my brother-in-law has a shunt and it had to be renewed at some point because it wasn’t long enough. That’s not supposed to happen – generally they put in a pretty long tube to start with. The usual reason a shunt has to be renewed is because it gets blocked. Luckily the surgeons were able to untether Zyma’s spinal cord during the foetal operation and so far she doesn’t need a shunt. We were told that if she doesn’t need one by a year old she probably won’t need one at all. By 2 years she almost definitely won’t. After the surgery the ventricles in her brain were within normal range throughout the rest of the pregnancy and still looked exactly the same when she was a newborn. They’ve since widened slightly but were stable between the 3 month and 6 month appointments so as long as they stay that way all is good. She recently had an MRI, which is technically part of her 1 year checkup so we won’t actually see the neurosurgeon and get the results until then – unless something looks seriously wrong and she needs urgent surgery. Since it’s been over two weeks and we haven’t heard anything I’m hoping it’s safe to assume that isn’t the case.
Currently the only part of Zyma we know is affected is her bladder. She has neurogenic bladder, meaning the nerves and muscles that control the bladder don’t work together well. In her case, the bladder is overactive. The muscles constantly contract when only a small amount of urine is present. Over time this could cause urine to flow back into the kidneys, so she’s now on medicine to keep her bladder calm and we catheterise her four to five times a day. later, she’ll be able to do it herself.
So far she’s taken everything in her stride with only minimal fuss/crying – all the appointments and tests, the medication and catheter, physiotherapy. She’s a smiley, friendly baby who charms everyone she meets.My little superstar was absolutely worth everything we went through to have her.