Statistics vs. Positive Thinking

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.

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5 thoughts on “Statistics vs. Positive Thinking

  1. Yeah, totally agree.

    When we started reading about Medulloblastoma, we cried. Then we cried more. Then we talked about quality of life stuff. This was scary, and overwhelming and awful.

    Then we kind of decided we didn’t want any more statistics, and were going to actively not read much more in regards to the specifics of the statistics of malignant brain cancers.

    In the end, the statistics were a compilation of years of treatment, and our little girl was surfing the crest of of the most current wave of research. That’s the kind of stuff that we wanted to hear.

    The rest, honestly, was not going to help us stay strong….and in the end, that’s the only thing that was going to really help Amelie in the months ahead. Our strength.

    This is not to say that you should hide your head, but that we just don’t want to know lots of stuff…like percentages of survival and the sort.

    She’ll either thrive, or she wont.

    Colten will either thrive, or he won’t.

    All we can do is hope, and be strong with wherever our kids end up. Right?

  2. I have that book and I think I have looked at it twice. I have found that my other mom friends offer a far greater wealth of knowledge of what happens in real life . Remember those things are just numbers. We live in a time when things are constantly changing, including the care of our kids, so try if you can not to dwell on those statistics.

  3. I haven’t read the book, but I have to agree about trying to not let it overwhelm your senses with it’s information. It’s similar to when we have a pain or an ailment so we go to the internet for information. Sometimes, that’s not always a good thing to have so much info that finds it’s way into our head filling us with fears.

  4. A very dear friend of mine has a shunt. He had an astrocytoma that the doctors found when he was around 13. At that point, it was the size of a plumb. He had lots of surgeries when he was little, and they put the shunt in after they removed the tumor. He went through a number of revisions, but the last time they revised it, they put in a new one that can be controlled by a magnet. He’s 31 now, and perfectly healthy. The last surgery was about 7 years ago. Your little guy is going to beat the odds. He looks JUST like his brothers. Cute as a button 🙂

  5. Pingback: Diagnosis Day – Two Years Later | The Adventures of Colten Robert

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