A Veteran SBer’s Perspective on the MOMS

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!

About Misty

I'm a Christ follower before anything else! I was born with spina bifida. I've heard it called the most devastating, crippling birth defect that is still compatible with life. I have a totally different perspective on that. I'm married to a wonderful man and we are getting ready for some new beginnings! Jump on for the ride!
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6 Responses to A Veteran SBer’s Perspective on the MOMS

  1. You know I have very mixed emotions about the study. I feel it’s a huge step in the right direction. I was offered the study but eventually turned it out because of the mandatory amniocentesis. And now a year later I couldn’t be more happy about my choice. I couldn’t imagine not having her because of a small percentage of miscarriage. I think it would have thrown me over the edge for such a huge loss. Lyla is one of those small percentages that hasn’t needed a shunt and and even if she did have a little more leg movement it wouldn’t change anything we feel about her. And we too can not imagine a life were we don’t have this amazing support group. I love you guys. SB or not I think we were meant to be friends. I needed good people like you all in my life. I get very excited when I hear anything good about SB, wether it’s for my baby or the future generation. Because SB will always be apart of our lives and who knows what the future can bring.

  2. Virginia says:

    Wow Misty! So true. i was also thinking Wow, how can this be? Why wasnt this offered to my daughter? But you know my questions soon were answered. IF GOD would have wanted it our grand baby to be born without SB , then He would have created her that way or intervened. So I will continue to Thank HIM for blessing us with her just the way she is. I believe she too will have a bigger purpose and only God knows what. So in the meantime I will continue to just Thank God daily for the little miracles, and thank Him because her circumstance may very well be the connection I need to keep plugged into HIM and My Jesus because it does draw me closer to HIM. For I know where our help comes from. Thank you for posting this.

  3. Jamie says:

    I feel very similar to Lysette. We were offered it, we could have gone, and we almost did go. But I was risking her life to make her “closer to normal”. I couldn’t do it. I couldn’t risk her life for her functioning. I am thankful it has helped so many families, and I pray they can minimize the risks associated with it so that it is even more benificial. I pray amazing things come from this study. But I am still thankful we did not participate.

  4. Julia says:

    Misty, I feel yet again that you have caused people to stop and ponder. Some may have the “what if’s” but then there are others that just know that they are perfect just the way they are and have so much to offer like you . I thank God for all that you have taught me and for the witness that you have become. The future for you is going to be so bright and I know that your gifts and talents will be used for HIS glory! Keep on keeping on and continue to be the voice for those that need direction. God Bless

  5. Gretchen says:

    What an amazing post! I am not sure how I stumbled here today, but I am glad tht God brought me here 😉

    I like your persepective, and totally agree that the choice is between each parent and God. For me, it was the idea of what ifs latter that pushed me to fall on my knees before God. We were offered the surgery BEFORE the study officialy began! And in my searching and praying I had this CLEAR picture of my child YEARS down the road looking at me and asking “Why didn’t you do this for me mom?” Ouch. How could I answer that my own fear made me not do everything I could for him? That is when God clearly told me that HE was in charge and He put me on this path for a reason and to just walk it :) 10+ years latter and I am still amazed at the path :)

    Thanks for sharing your heart, and l look forward to reading more of your thoughts :)

  6. Hilary Jabbour says:

    that was beautiful. thanks. :)

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