One of the local families we met last weekend at the Sparrow picnic recommended a book for us – Children with Spina Bifida – A Parent’s Guide, edited by Marlene Lutkenhoff. I immediately found the book on Amazon and ordered it.
It arrived yesterday and I started reading it today. Despite all the complications and possibilities of things that can go wrong through Colten’s life because of the Spina Bifida, I have truly tried to remain optimistic that we will be one of the cases that is incredibly mild. Yes, there are certain baseline things that will just come with SB, such as bladder and bowel control, but when I start to think about his mobility, I am extremely optimistic that we will either have it easy or he’ll be such a hard worker that he will walk, unassisted, at some point in his life.
Then, as I said, I started reading the book. I keep getting statistics thrown at me. New realities and things that could go wrong or things that might happen down the road or WILL happen down the road. Such as surgeries – most likely his first will be far from his last; fractures – incredibly common in children with SB; orthotics and assistive devices – very common even if just for short periods of growth and development. And then to keep reading about how even kids that do walk sometimes choose a wheelchair later on because it’s simply too draining for them to walk.
Not that any of us can ever predict what our child’s life will be like, but it’s just that much scarier when you know how many challenging things truly are coming down the road ahead.
Here are some statistics from the book…
- 7 out of 10,000 (1 in 1428) babies born in the United States have spina bifida.
- 95% of babies born with spina bifida have parents with no family history of spina bifida or related birth defects.
- 80% of babies born with spina bifida will end up with hydrocephalus, requiring a shunt inserted through the skull into the fluid cavities of the brain. I don’t know why I was thinking this was just a superficial implant between the skull and skin. Then it hit me today that this is brain surgery. How I missed that realization I will never know.
- 85-90% of children born with spina bifida will have the Chiari II malformation, but only a small percentage show symptoms and problems that eventually require surgical management (shunt revision or placement at a minimum).
- Tethered cord is found in 100% of children with spina bifida; this is a result of scar tissue from the surgery after birth. Surgery is usually inevitable and may be required multiple times throughout the person’s life as re-tethering can occur.
- 30% of children with spina bifida have clubfoot.
- Scoliosis affects over 50% of children with spina bifida.
And those are the statistics. Then there’s a bunch of other stuff I just read that is just as unsettling but doesn’t have statistics tied to it. So I’ve closed the book for tonight. I know this book will become a fabulous resource for us for years to come, but it’s a bit overwhelming right now.