If you’re part of the SB community at all, you’ve heard the buzz going around that the MOM Study has concluded! For those of you who don’t spend your days carting little ones to physical therapy and worrying about shunt malfunction, allow me to shed a little light. The Management of Myelomeningocele Study (MOMS) has been a highly controversial study looking at whether intrauterine surgery produces a better outcome than postnatal surgery for those of us born with spina bifida. Well, the results are in, and things look really great for the most part! The intrauterine study seems to show a decreased need for a shunt and less neurological damage for about half of the babies. This seems to be more hope than we’ve ever had in the past! There are still risks that have to be weighed by each individual mom and dad, but over time, I think this will change the face of SB forever.
When I first heard the news yesterday, I got extremely excited and texted my best friend joking about how the medical community had just rendered my blog irrelevant! LOL! I was bubbling with excitement and expectation for the next generation of little “Me’s”. It was an awesome moment!
Then, if I’m being gut level honest, there was about twenty minutes where I realized I had missed the mark by just a few years. I was born in 1983, and the study began in the early ’90’s. I started to feel bad for myself, and started wondering about all the what if’s. Could I be “normal”? Would I still have to use AFO’s and all the other medical equipment I deal with everyday? The study says that in some cases, functional levels are four vertebra lower than actual lesion level. I, being a L5, could have been nearly unaffected by SB. I would have been just about totally functional. Maybe a pinky toe would have been an argumentative wiggler, but that would have been about it. There was definitely a pity party moment.
Then I started to think about all these babies I loved so much. I missed it by a few years. They missed it by mere minutes! Ouch. This cut me deeper than my own “miss”. The study was late for “my” babies. I’ve heard that when you’re a parent, you always want your children to have more than you did. I think I understand now. I want them to run circles around me. I want them to experience less physical therapy and see fewer Batman figures on the ceilings of OR waiting rooms. I just want them to have it easier. This round of feelings was a really rough one for me.
This morning though, I started thinking all over again about my what if’s, and I came to a much different conclusion. What if the diagnosis of SB had meant almost nothing for me? Who would I be without thirteen surgeries and no catheters, without AFO’s to put on in the morning, without the shunt in my brain? This could have changed nearly everything in my entire life! Would I have had the same friends I did, or would I be a little more superficial and pick the “in crowd” to hang with instead of giving everyone an equal chance? Would I still have understood from such a young age that every day I have is to be treasured? Maybe not. Would I have dated in the same circles I did, or would I go for that football player instead? Would I have James? I don’t know. Would I have met, “Smush,” or “Geli,” or “Maddi?” I don’t think so. Would I have known that there are certain things in life that no one can fix for me but God? Would I have come to the point of collapse and surrendered to Him? I’m not sure. He probably would have found another way to get me there, but I’m not sure how. Thing is, I love the journey that SB has brought me to. There are days when I don’t want to make friends with the SB itself, but what I’ve gotten in exchange is priceless.
So, for those mothers and fathers who are debating having the surgery, my personal vote for you is, if you qualify, if its right for you, “Do it!” I think it will change the future for your children, and I want it for them. But to the medical community who was just a little late for me (I’m not bashing you. I love you!)…I’ll keep my AFO’s, and my catheters, and my UTI’s, and my thirteen surgeries, and my shunt, and my family, and my friends, and my little tiny apartment, and my dog, and my babies, and my James, and my journey, and my God who loves me more than I could ever comprehend, and you can keep your what if’s. I don’t need ’em!