Day #106 - The MOMS Study

Spina Bifida has been in the news a lot lately because of the positive results of a study called the MOMS Study. When I had my ultrasound at 18 weeks and found out about Lily's birth defect, we were informed that we could possibly qualify to participate in this study. After the initial shock of everything, we began to talk seriously about the possibility of joining the study. The MOMS Study was the only opportunity for our daughter to have her spinal closure in-utero. It felt crazy to consider something so risky. But we also felt that it could mean a better opportunity for Lily to walk or to lessen the effects of her hydrocephalus (water on the brain). After much prayer we felt prompted to move forward with applying for the study. It was a very involved process with long interviews over the phone and a lot of paper work. As we moved forward, every step of the process brought more feelings of uncertainty and stress. But Joel and I could not deny the peaceful feelings we felt, despite our own fears. If chosen for the study it was possible that I would have surgery and be on bed rest for the rest of my pregnancy, separated from Joel and my children until Lily's birth. My parents were making preparations to drive and meet me in California so that they could help take care of me. I said goodbye to my sweet little children and we were flown out (by the study coordinator) to UCSF in San Francisco. This was the final step in the long process to be accepted into the study. I did ultrasounds, an echo cardiogram, a fetal MRI, we were interviewed by specialists and so on. We also got the opportunity to drill all of the specialists with all of our questions, not just about the study, but about spina bifida. It was exhausting, but amazing all at the same time. In the end, at the very last hour, Lily did not qualify. The study has very specific qualifications for both the mother and child. It was a close call based on measurements of a curve in Lily's spine. We couldn't have been more relieved that the choice was taken out of our hands and we went home feeling happy and blessed. After meeting with such wonderful specialists who gave us such good information about spina bifida, we were comforted and empowered. This entire experience led us to our ultimate decision to move and have Lily cared in a much better location with greater support and specialty care.

The great news that has come out as a result of the study is that the in-utero surgery increases a child's chance for walking and can also reverse the effects of hydrocephalus. Read more on the results by clicking on any one of the links below. I am happy that the study has brought about such a positive result. And despite not being able to participate ourselves and see Lily's situation improved, we feel grateful for the great change it brought to our whole family for good.

The Washington Post: Study: Surgery in Womb helps babies with spina bifida

The New York Times: Success of Spina Bifida Study Opens Fetal Surgery Door

CNN: Study: Major benefits for spina bifida study in the womb