My MOMS story

I was sitting at my desk today when I read that the results of the MOMS study had been released, and they've concluded that fetal surgery repair of Spina Bifida really does improve the outcome for babies who have SB. And not just the decreased risk for the shunt--also in mobility. This is huge. And all these memories and emotions came back from nearly five years ago when we first learned about MOMS.

It was the day after I received the diagnosis at 20 weeks gestation that my baby boy had Spina Bifida. I took the day off work and was on bedrest because I'd had an amnio the day before, but I knew even without medical advice I would have spent most of the day in bed anyway. I remember dragging myself out of bed to my computer to google Spina Bifida, then after a few minutes, crawling back into bed to cry some more. That's the day I decided on Nate's name--Nathaniel means "Gift from God"--and when I got brave enough to drag myself back to the computer, I stumbled across a picture of a little boy who has Spina Bifida holding a cane. Now I wish I remembered the boy's name, but all I remember was that he looked so healthy and "normal." I could deal with this picture. The caption said he'd had fetal surgery at Vanderbilt. HOPE! I found hope! There was something I could DO! This could help!

After some more internet searching, I found a phone number for Mary Dabrowiak at Vanderbilt. I acted as brave as I could and told her we wanted fetal surgery. She asked me when we got the diagnosis and I told her just yesterday. "Oh honey," she said. Then she explained that it wasn't that simple, that there was a study, and if we decided we wanted to join the study, there was still a 50% chance we would be randomized to postnatal. I contacted the MOMS study, and after three weeks of intense phone conversations with them, praying, worrying, and a few glitches that threatened to delay us, we arrived at Vanderbilt for our two-day consultation. I had to pack for what might be a two day stay or a four month stay. If we decided to do the surgery and were randomized to fetal surgery, there would be no time to go back home.

Nate and I had lots of tests--a fetal echochardiogram, several ultrasounds of the brain and spine, and an MRI--a first for me, and the first of many for Nate. But three conversations from those two days stand out the most to me, and they all occurred on the second day. That morning, we were scheduled to meet with Dr. Tulipan, the neurosurgeon who performs the surgery. I was so excited and hopeful to meet him, because he was a pioneer for fetal surgery for SB. Mary and Tracy gave us a vague warning to have questions prepared because he wasn't very talkative. So my first question was something to the effect of, "Will fetal surgery help our son?" Based on Nate's level of L2, he said that even with the fetal surgery, he would need a shunt and would be using a wheelchair by the time he was in high school. Well, I now understand that a shunt and wheelchair are not by any means the end of the world, but at the time, that's what it felt like. I cried the rest of the appointment while Blake tried to ask questions. All my hopes were crushed.

We also met with Dr. Walsh, the neonatologist. He was so kind, and unlike the others in the study who were so guarded and emphasized the risks so much that it seemed like they were talking you out of it, he expressed hope. He told us the risks of prematurity but that if I could make it to 32 weeks, the benefits of the surgery would outweigh the risks of prematurity. I held onto that.

And lastly we met with an ethitist. I'm still not quite sure what an ethitist actually does, but he was a lot like a psychologist. He asked us a lot of hard questions to make us fully think through this decision. The question I remember most was when he asked, "Why do you want to do this surgery?" When I said it was because I wanted to DO something--I couldn't stand the thought of just sitting around waiting--he said, "But what if this thing that you DO actually causes more harm than good?" Ouch. And that was a very good question.

Blake and I went back to our hotel, both of us so exhausted from all the emotions of the day. We had to make a decision that night whether we wanted to join the study. Blake was leaning toward not doing it. "Dr. Tulipan himself said it wouldn't help! Why would we put you and Nate at risk for something that won't help?" But I kept thinking, "But what if it WILL help?" Blake told me he would defer the decision to me. I needed some time alone to pray, so he left to get us some dinner. I prayed HARD--weeping, desperate prayer:

God, we have no idea what to do! This could help him, or it could hurt him or kill him. We can't see the future! How are we supposed to know which decision to make? Only you can see the future--please, show me what to do!

He was merciful and answered me quickly. "Let Me Decide." I didn't hear it audibly, but those are the words that came to me, on my mind and heart. And I felt such peace because I knew exactly what that meant. Join the study, and let God take over from there. I then remembered talking to my dad a couple weeks before about the uncertainty of being randomized, and he had said, "God controls computers too." I didn't cry any more that night. Blake and I felt total peace about the decision, because it wasn't our arbitrary decision that we might someday regret if something went wrong. The one who knows the future made the decision for us, and we trusted him.

The next morning, we sat in the room with the ethitist, Mary, and (I think) Dr. Yang (the head MOMS doc at the time). They asked if we had any questions. No. They asked if we wanted to join the study. We said yes. Are you sure? Yes. It was so surreal; two minutes later, we were across the hall at Mary's computer, and she pushed a button and then up popped the message that we were randomized to fetal surgery. I was not at all surprised. After about a minute, I asked where the bathroom was. Mary asked if I was going to be sick, and I told her no, just pregnant and have to go to the bathroom! It was so strange how calm we were about the whole process.

If you are interested in what happened after that, you can read Excerpts from my pregnancy journal here. But today, as the positive results of this study were announced in national media, I have thought so much about those days of uncertainty. Joining the study was a total leap of faith, and we have never regretted our decision. Not because it wasn't scary, because it was--when my water broke at 28 weeks, when he was born at 32 weeks, when he wouldn't wean off oxygen for what seemed like eternity, when he was forever sick as a baby. But we have never regretted it because we are positive that it's what God intended for us to do with Nate. Since Nate's birth, we've often wondered if the surgery really helped Nate or if this is how he would have functioned anyway. I have always given credit for him not needing a shunt to the fetal surgery, because that was a benefit that had been proven early on. Now they report that fetal surgeries babies are half as likely to need a shunt. As for the walking independently and functioning 4 levels below what he should (should be L2, functions as S1), I wasn't so sure if that was a result of the study or just the particulars of Nate's condition. But now the study reports that fetal surgery babies are more than twice as likely to be walking independently at 30 months. And Nate didn't even help that statistic because he was still walking in his walker when we went back for his 30 month assessment.

What's also interesting is that the study reports that only 15% of people who inquired about the study actually participated, either because they did not qualify for one reason or another or could not commit to the rigorous requirements demanded from the study. And now maybe more people will choose to participate if they qualify, but I truly believe that this is not for everyone. The prematurity risk is very real, and I can attest that it is serious and scary. And some people logistically just absolutely cannot pack up their entire lives for 6 months and go live near one of the hospitals. Especially those that have children--if I had to make this decision for my second child (not knowing what I know now), I'm not sure what I would have done.

I have hugged and kissed on Nate and told him I loved him tonight to the point that he started looking at me funny. I feel so grateful that we were a small part of a historically important medical study that could fundamentally change the future of Spina bifida. I'm indescribably grateful that it made a difference for him. And the whole experience of being at that place of brokenness and finding hope and relying on God was a defining moment in my life that changed everything. (Take THAT, Dr. Tulipan!)