This first hand account has opened my eyes. He is not even in high school yet and has already had 37 surgeries. 37. And he still lives in serious, significant pain. He has his good days, but it seems as if they are minimal. He attends school, but for right now, he can only handle three hours a day. In the past, he was home schooled for (obvious) medical reasons.
Reading through the entries (over 800 of them!), I realized that spina bifida was way more complicated and painful than I had thought. Hearing how this family copes with his illness has shocked me with just how consuming spina bifida can really be.
It was also reassuring to see a realistic portrayal of the illness – I can easily find stories about happy infants and “miracle babies” who have fully-functioning adult lives, but I know that those are stories to give people hope.
So I started poking around a little more. I read another blog about a little girl whose mother had to quit work because the daughter could only go to school three days a week, and the nurse/caretaker quit. I understand now why so many parents have to quit their job, or only work part-time.
I read about another baby who died after only nine days during her second surgery. The mother was not a candidate for prenatal surgery, so immediately after birth, she had a surgery to repair the spine, and this second surgery was for a shunt. The baby didn’t make it.
I read about another family with seven biological kids, several with autism and one with spina bifida. They also adopted two children with Down Syndrome. They decided to have fundraisers on their webpage to help them pay for medical care.
I read about babies with the best case scenarios, and cried when they met milestones and faced setbacks. It’s not as if I think all babies with spina bifida should have been terminated. But even with these best case scenarios, they all seemed to spend way too much time emergency rooms and recovery rooms.
My husband sat next to me last night, and we skimmed over these webpages and more. And as horrible as it sounds, we found all these stories to be confirmation that we made the decision that was best for our child, for our family.
There is also a part of anger that I feel with these parents for being so selfish. The one mother who lost her newborn after the shunt surgery said that her daughter was only here for nine beautiful days. Beautiful? I just can’t help think that while the baby was beautiful, her time here was not beautiful. It was full of surgeries and medication and pain management. Why?
I try not to judge, but it makes me angry. I’m sure just as angry as I make them. It’s hard to look at the other side of the coin and see where you COULD have been had you just made a different choice. I think that you *have* to get angry at the other choice in order to convince yourself that you made the right choice. When you think YOU have made the compassionate choice, of course the alternatives are cruel and selfish.
I know that for me, the best gift I could have given to my daughter was prevention. I don’t understand how anti-choice advocates scream about fetuses feeling pain during an abortion, but don’t seem to give a damn about the pain that infants feel, the pain that children feel, the pain that the families feel.
There is no easy choice and I might never fully agree with the alternatives that were offered to me, but I will always be thankful that I was given the choice to protect my child.