I've been listening to the SB community buzz out there, and it seems there is a lot of mixed feelings about the results of the MOM study (Management of Myelomeningocele Study). From some comments I've read, I almost feel indirectly attacked for participating ("How could anybody risk their baby's life like that?"). I believe both those that chose the fetal surgery, and those that did not, did the right thing for their child and their family. It is a personal decision, and here is our personal reason.
So, why did we pursue the fetal surgery after we found out about Ruth's diagnosis?
The experts we met with locally (a perinatologist and a pediatric neurologist) both felt strongly that the fetal surgery could help with the hydrocephalus aspect of spina bifida. They both impressed on us how that one thing could make her life easier. A shunt is a life saving device that helps drain away that fluid. It does save lives, everyday. But we hoped that was one surgery she wouldn't need.
The experts we met with at UCSF during our evaluation at the trial, all seemed very enthusiastic about the surgery and it's potentials. We were naturally concerned about the risks. The statistics given to us about the surgeries done before the trial started were SCARY. I could see, based on those, someone would walk away. But those weren't what they were seeing at UCSF. They told us they had NEVER lost a baby nor a mother to this surgery. They were good at what they did, the surgeons there were the best in the world. I felt confident we were in good hands.
We also prayed. We prayed A LOT. Our family prayed, our friends prayed. We knew if the doors opened for us to have this surgery, it was His will. Because of the trial aspect, and the randomization, there was low odds of getting to have the fetal surgery. If we were given the chance, we felt it was the right path.
I remember the day of the surgery, saying goodbye to Matt and getting wheeled into the operating room. I felt total peace. I was not scared at all, I knew everything would be fine. And it was. The surgery was called "textbook".
Ruth was a super star during her first appearance in this world. Even the rest of the pregnancy was somewhat "normal", that is until I went into labor at 31 weeks.
I do feel guilt about her prematurity. That is something that likely would not have happened had she not had the fetal surgery. But she handled that like the superstar she is. She required no help breathing after the first few moments of her life (she was on c-pap briefly). The main thing that kept us in the hospital was her learning to eat (a preemie thing, they don't know how to suck until about 34-35 weeks), and then right before discharge, she had a UTI that required a couple days of antibiotics. I do feel fortunate she did so well, and continues to do so well.
She does not have a shunt, but she may still need a shunt. She may not walk without braces, but it looks promising as she has great movement and strength in her legs. She already has issues with her bladder and kidneys, and requires medication and cathing. Is she better off because of the fetal surgery? I believe so. But that's one thing you can never know FOR SURE, because how can you know?
I have no regrets. I believe we did the right thing for her, and regardless of the study results I do believe she benefited. I also participated for the sake of future children. So they would have the best treatment available, and not have to wonder like we did.
For those interested, the numbers comparing the two sides of the study (prenatal and postnatal) were the most telling to me. The kids on the prenatal side had a higher number of L1-L2 lesions than the postnatal side, but had better results on the areas they looked at.
What about bladder and bowel issues? Those aren't addressed yet, because of the young ages of the kids. Many kids without spina bifida aren't potty trained at 30 months. I believe that is one thing they will look at when they follow the kids at older ages. I am interested to hear the results of those as well.
One thing a friend wrote in her blog hit home, maybe now that fetal surgery is shown to help, some OB's will stop pushing termination. Maybe, in that way, it will save a baby's life.
My hope now is, with all the positive results here and media attention, more research will begin and continue to help those already living with spina bifida.
The study numbers: