What is Spina Bifida? What did the in utero surgery actually do? And if you didn't have that what would have happened when he was born?
I feel like Evan is on the more functional side of the spectrum. Do you believe that was because of the in-utero surgery you had?
Evan's form of Spina Bifida, myelomeningocele, is the most severe form of Spina Bifida. It means that there was an opening in his spine and back, leaving his spinal cord protruding and exposed to amniotic fluid and being touched—potential causes of nerve damage.
I remember the doctor showing us on the ultrasound how the upper vertebrae looked like this: ^^^^^. At a certain point they inverted to this: vvvvv which is where the opening in Evan's back started. The point where the hole starts is what we call his lesion level, which, for Evan, is L3/L4. How well a person with Spina Bifida can function is typically related to lesion level because nerves from that point down are affected. Lower levels are good. Less nerves affected. L3/L4 is moderate, I'd say.
On diagnosis day, the doctor showed us a chart like these and told us that Evan would probably need help walking, and was on the edge of needing a wheelchair or not. Then he gave us 3 options:
1. Post natal surgery: The most common option. When my child is born he would be taken off pretty quickly to have surgery to close the hole in his back.
2. Fetal surgery: Newer, more risky option. Open me up and close the hole in baby's back between 21 and 26 weeks of pregnancy, then close me up and try to keep me pregnant.
3. Terminate the pregnancy (out of the question for us)
The obvious and plentiful risks associated with fetal surgery make it not the right choice for every family. There were a few predicted benefits, however, that drew us in. In closing the hole earlier you cover the spinal cord and protect the nerves earlier. That's obviously a good thing. From the study that was done to test the effectiveness of fetal surgery, it showed that people who had fetal surgery performed, on average, two levels lower than their lesion. So Evan could potentially function more like L5/S1. And I think that's what happened. Referring to the charts above, rather than needing a wheelchair and long braces, Evan has short braces and cables for his abnormal feet positioning. He's definitely functioning on the less severe side of the spectrum, and it makes sense to me that fetal surgery made the difference.
There are some motherhood "rites of passage" that I've wanted since before I was a mom. There were also some things I didn't realize I wanted until I couldn't have them. When we decided to pursue fetal surgery, my opportunities for some true motherhood experiences went out the window. For example, I'll never know 40 weeks of pregnancy. I'll never know labor. Contractions? What are those? I know that most people who have experienced pregnancy and labor would tell me to put these things in the category of "Stupidest things I ever wanted." But since my perspective is a 6-week premature baby, a 3-week nicu stay, 4 months of portable oxygen, 2 c-sections, and a limited number of children I can birth...sometimes I can't help but wish I had those stupid things in my life.
The grass is always greener, I guess.
Being independent, pulling bowls out of kitchen cupboards, dumping toy boxes, breastfeeding, messy self-feeding... When Evan didn't do these things I tried to convince myself that they were stupid things to want. I've tried to be grateful for everything Evan does. But really, I laugh when Seth opens the cupboards and pulls out the pot lids and throws them around the kitchen floor. I take pictures as he rips all the books off the shelf less than ten seconds after I picked them all up. I'm proud when he ravages through the toy box to find something to play with. These are legit motherhood experiences that I hadn't had before, and I'm finding joy in the many things Seth is able to do.
Someone just created a graphic for Spina Bifida awareness month (October) that says, "Our house is Spina Bifida strong." Although many of the experiences I've had with Seth have been easier and maybe more enjoyable than the experiences of raising a child with Spina Bifida, our family would not have the strength, bond, love, unity, and understanding that we have, without Evan. He is such a blessing! He makes me laugh, he makes me think, he questions me, he questions me again, he drives me crazy, and then he softens my heart and teaches me about patience, love, innocence, joy, priorities. At times I wish I could trade Evan's experiences for easier ones, but I wouldn't ever give up who we've been able to become through the harder experiences. Maybe Spina Bifida is the stupidest thing I've ever wanted, but I know we wouldn't be the same without it, so today I'm grateful.
In one month we are participating in our 2nd Walk-n-Roll for Spina Bifida! Last time Evan had his nifty silver walker. This time he'll be walking independently, and probably even running part of the course. All of the funds raised will go to the Spina Bifida Association, including money for our local chapter to host socials where Evan gets to meet other people who have Spina Bifida, shunts, braces. That's starting to mean something to him, though he still doesn't quite get why Seth doesn't have a shunt...
If you want, you can donate to this great group. And if you're local and want to join us on November 5th in Walnut Creek, register and make sure to choose Evan's team which he appropriately named, "Go Spina Bifida!"