God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't take a special family, it makes a special family.

Thursday, February 10, 2011

The last two days have been filled with mixed emotions. While I know all of my SB moms have heard the news and read the results, the rest of you may not have heard. Though if you follow the news, chances are you have. For several years, there has been a MOMS study going on. This was a huge research study being done to see if prenatal closure of an open SB lesion is beneficial for babies receiving a diagnosis in utero. The study has been closed and results were just published that yes, prenatal surgery is beneficial. Many kids who were part of the prenatal surgery group have less bowel and bladder problems, have a smaller chance of needing a shunt, the Chiari malformation tends to correct itself, and they are more likely to become independently mobile.
Over the past three years Jonathan and I have always talked about whether we would have tried to become part of the study. Since Brenden wasn't diagnosed during the pregnancy, it was never an option. While I can sit here and speculate that we would have chosen to participate, there wouldn't have been a guarantee that we would have been chosen for prenatal surgery. Participants were randomized once approved, half had surgery prenatally, half had surgery after birth. Participants selected for prenatal surgery were required to relocate for the remainder of the pregnancy, and since surgery happened before 26 (I think) weeks, that was a few months of living away from family. Preterm delivery was a potential risk, so they had to be close to the hospital to be monitored.
I know several children who were part of the prenatal group and to see how well they are doing today is amazing. Does it make me jealous that they had that option? Yes, in a way it does. Does it make me angry that my 20 week anatomy scan was misread and we didn't get a diagnosis to even consider the MOMS trial? Most definitely. But I've made a decision to not dwell on the fact that there was a chance that Brenden could have had a different outcome. This prenatal surgery is NOT a cure for spina bifida. Maybe it's a step in the right direction for finding a cure, but this is ground breaking in my opinion. In our world, this is huge for these results to show that it is beneficial. Which means that eventually more doctors across the country will be able to perform this surgery to help more babies.
I keep reminding myself that we are where we are for a reason. As hard as it is to accept sometimes, I know in my heart there was a reason we didn't know about Brenden's diagnosis until he was 5 hours old. I'm thankful for the moms and dads who took the chance to participate in this study. I've heard their stories and I know it wasn't easy. I know it was a long, emotional process. These families sacrificed so much with the hope of changing the outcome of SB as we know it.
Here's the link to a friend's blog....she was selected for prenatal surgery and she has shared her story on her blog. Take time to read her experience:


Joanna said...

Sweet friend. :) I just wanted to say that I know in my heart of hearts - that all of our sweet babies are being used in their own glorious ways for God's plan. Whatever their struggles or successes, number of surgeries or therapies - no matter our worries or wishes - He has a beautiful plan for them. And I see so much, every day, what a blessing our children are to this world. Every day. In every way. They are redefining spina bifida - each and every one of them. :)

Gretchen said...


I am not sure if I have commented here before, I follow (at my own slow pace as you can see :) ) but commenting escapes me....

But I feel on my heart to say to you....

God has a plan for EVERY sweet person with SB and EVERY ONE of our families! He KNOWS the path He has for you and He will work EVERYTHING together for His pourpose in that. Don't second guess the past, live in the present and celebrate the future!

I also have to say, while I was blessed to have the surgery BEFORE it became the study, it was NOT easy and the way that I endured was knowing that it was where God wanted ME!

Big cyber {{{HUGS}}} from a fellow SB mommy!