The day after the ultrasound that confirmed Kemper had Spina Bifida, we went to see Dr. Culler in Chapel Hill, NC. He had previously worked with the MOMS study in which the repair surgery is done in utero instead of after birth.Our Perinatologist sent us to him for a second look and he said the words that helped me pull my broken heart and shattered dreams back together.
"By the time he's two you may never even know he had Spina Bifida."
Not a guarantee, not a certainty, but hope to cling to that my baby would have a shot at typical. Thing is, back then I didn't know much about Spina Bifida so I wasn't sure what I was hoping for. All I knew was that what the Perinatologist had to say had been the most frightening, disheartening, terrible future for our baby.
Turns out, that's pretty normal when you're delivered the Spina Bifida diagnosis. I believe it's a combination of CYA (cover your ass) and outdated information. It takes a very long time for the standard of care to change and for information to be up to date for doctors that don't deal with Spina Bifida every day.
Dr. Culler gave us a better informed, more realistic set of expectations because his career included ground breaking surgery on a fetus's spinal cord. I'm not saying that's what it takes to get informed doctors, but it feels pretty close to that sometimes.
Anyway, let's fast forward two years. Turns out that Kemper still noticeably has Spina Bifida and that is OK. Lots of things have changed, lots of things are better than we ever hoped, and I've made some fantastic friends in the SB community. I will say this, Kemper has very high functioning for Spina Bifida, his lesion is sacral, and he can walk. So, I suppose on the outside if you look at him, you see a typical child. But he's got a ton of stuff going on medically and developmentally. Again, not as much as most kids with SB, but he's still got it happening.
I continue to digress. My point is this, if you told me two years ago that there would be a point where I could cath him in an airport bathroom with people staring and not bat an eye, I would have called you a dirty liar. If you told me that I would get through sending him to the OR 5 times without fainting, I wouldn't have believed you. If you said, you're going to get to the SB Conference and meet all these people who've supported you in your journey, I would have said Kemper was far too fragile to travel. He flew twice this year and took countless car trips with me. He fell on his face, slammed his fingers in doors, threw tantrums, and all kinds of other stuff too.
This is our life. Kemper is our world and he is living. Yeah, he's got Spina Bifida, but in a way, that doctor was right. It's not the first thing we think of anymore. Yeah he wears braces, yeah, he's got a shunt, etc, etc. No big. I can't believe I reached this point, so I guess it is a big deal. I want all the newly diagnosed parents out there to know that this place exists. I'm settling in and grabbing a drink with an umbrella in it, I'll see you here in a couple of years. Until then, if you need me, I'm there.