Recently Diagnosed-Experienmental surgery?

[jason6936]

My wife and I just found out at 20 weeks that our baby girl has water on the brain and an amino was done last Wed to determine if in fact it is SB. The venticles measured bout 15. The doctor is 90% sure that it is SB and there is an opening on sacral area that was found on US. My good friend has a son with a severe case of SB (1 1/2yr old) but mentally everything seems to be fine. My question-- Has anyone had fetal surgery done and what was your results? We know the cut off is 25 and we want to take an aggressive approach at SB. Having a good friend with a child with SB, He has given me good hope due to fact the spine is affected lower on the spine. We meet with our doctors on Tuesday and should be given more details on amino results. All comments are welcomed or any feedback. But if anyone has had fetal surgery done please comment. We would love to hear what you have to say.

Thank you--Jason

[LisaJoy]

Welcome, Jason -- glad you found us. And glad you have a friend with sb "experience" who can help guide you through this.

I can't answer your questions about MOMS (www.spinabifidamoms.com), but I think there are a few people on this forum with experience in this program and hopefully they'll see your post and chime in.

[Dodger67]

Hi Jason
Welcome on board!
I also don't have any experience of the surgery - it didn't exist when I was born.

[Bigwilli]

Hi Jason,

Me and my wife looked into as well but declined as there just wasn't enough info out there to help us go through with it. My understanding from what I have read, which is verry little at best, is that the in utero surgery seems to help with the hydro but lil with affecting walking ability. Again, I think it's way to early to decide.

Good luck in your search!

[valerie]

i have no experience with the fetal surgery but recently saw a documentry about it, it dealt with 2 cases and the outcomes were really positive for both mobility and hydro....

[davelowe85]

Hi Jason!

I'm not sure where you are located but I recently found out my daughter will be born with SB as well and her lesion in also in the sacral area. My girlfriend and I didn't find out until her 28 week ultrasound so we missed the cutoff for fetal surgery but I did look into it.

I believe there are two hospitals in the US that do the surgery with one of them being the Childrens Hospital in Philadelphia. I called there and the lady to talk to is a Jamie Koh (sp?)

From what I gathered about the surgery is that it is still relatively experimental but in most cases it has decreased the need for a shunt after birth and it prevents further damage to any exposed nerves.

Best of luck to you Jason. I'm in the same boat as you and found this forum a week or so ago and it is the best thing I've done since hearing the news about my daughter. The people on here are absolutley wonderful and extremely helpful. In short this site is a Godsend.

[laurabeth]

hi jason,

We recently found out as well that our son will be born with sb-myelo, hydro and chiari II. We are from Canada but were curious about the moms study as well. We asked our neurosurgeon about it, who offered to help us participate in the study if we wished, but we declined after he answered some of our questions...and because we were almost @ the cut off anyways!

As far as we have been told, the study is quite controversial because of the risks associated with it - because sb is not life threatening to mother or baby, but it becomes life threatening to both with the fetal surgery. Apparently the study was only supposed to last a few years, but has lasted a lot longer because they cannot seem to find enough people willing to participate. He told us that while there have been some positive outcomes with the baby, sometimes there ends up being more damage done to the spine, and has said that there has been some cases of the mother and/or baby dying. Also, he said theres quite a significant chance of the mother not being able to have children again. So there is really no concrete evidence as of yet that the study is beneficial. I guess the only way to find out or to perfect the surgeries is for people to participate!

I hope my information doesn't sound too negative! There are clearly benefits to the study just as there are risks...I hope you guys can figure out what is right for you!

All the best!

[matoro]

When I found out about my babies SB I looked into the MOMS project. I looked into the research and tried to find some of the results. I also had the pleasure of talking to a neonatologist who worked at Vanderbilt with Dr's involved in the project. She discussed with me how wonderfull the research is and that she hopes that someday it will be able to show that there is a difference between results of children who had the surgery and those who had the surgery after birth.

At present time there is not enough data to show that it makes a difference and even if you get into the program you don't get to choose in utero or post birth surgery. There is a lot of risk with that surgery. After talking to her and what I found (or didn't find) in the internet I chose to wait till my baby was born.

I think if remember correctly you have to be between 20 and 25 wks. (you'll have to double check that its been a while and things were kind of hectic at the time)