New to the site, and Q about EVT

[emandp]

Hi all,

My husband and I learned about a week and a half ago that our first baby, who’s due in August, has spina bifida (hers is a lower-lumbar lesion). Since then we have drawn a huge amount of comfort as well as education from this board. We are very anxious about the unknowns – particularly all the uncertainties that seem to come with shunting (which we are told she will likely need) – but we are thrilled that she has a great chance of having a fulfilling and wonderful life, with SB just a part of a larger picture.

Many of our questions have been answered in past posts here, for which we are most grateful. One question that remains is about third ventriculostomy (or “EVT” -- I believe "E" is for "endoscopic") (this is the surgery that is sometimes used as an alternative to shunting once a child is old enough to have it). Has anyone had experience with this surgery? Do folks have a sense as to why it’s infrequently addressed in the literature or on the SB boards? One reason it would be helpful for us to understand more about this alternative is that we are presently being evaluated for the MOMS study (experimental in utero surgery), and learning about EVT would help inform our analysis of the risks and benefits of the in utero surgery versus alternative options down the road. (On that note, we would also of course welcome any input from anyone with experience with the MOMS study itself.)

Many thanks and we look forward to being a part of the SBC community!

Best,
Emily & Phil

[kali]

welcome emily and phil, and congradulations! I am sorry I cannot answer your questions but I am sure someone else will.

[Barb]

Welcome and congrats on your baby. We considered a third vent (which is what a lot of people call an EVT) but it would not have been enough for C. It also depends on how well the ventricles are communicating. If there is a significant Chiari Malformation, which is common, the third vent is not an option (as far as I know).

How is the MOMS study different from the fetal surgeries performed for SB over the last 10 years? I know a few kids who went through fetal surgery but I can tell you (and I am sure that this is going to draw some fire) that I don't know that I think you can really tell a significant difference in the kids who do and don't (again these are the kids I have known over 10 years, their parents will tell you differently). But, I don't know anything about what the MOMS study is so I can't comment specifically about that.

[jonathansmom]

Congrats on the future addition to your family! We just had a little boy in Sept and looked into the MOMS study last May when we found out about his sb. We opted not to enroll in the study because of potential complications with anaesthesia and potentially having to move to Nashville for 5 months. His level is pretty low, L5-S1. If it were higher, it might have been worth more risks. Best of luck to you in whatever you decide to do :-)

[lolathechecker]

hello! im lola, im also pregnant with a baby girl with sb. she will be here this week, i think. she was supposed to be born last week, but the doctor got flooded in and couldnt leave his neighborhood!:eek:

i tried to sign up for the moms study, but i was too far along when my baby was diagnosed. the people seemed really nice, but i didnt particularly want to drop everything and move away to san francisco. they have 5 different hospitals where the baby can be operated on. but the plus to the study (in my opinion) is that if anyone knows what they are doing when it comes to sb, these people probably know. i think the study has been going on for 10+ years, so they probably have more experience than most in operating on newborns. although, im sure thats not ALL that their doctors do. but it seemed like a decent program.

[Dodger67]

Does the MOMS study have a website?
Curious minds want to know!

[emandp]

Absolutely -- here's their website: http://www.spinabifidamoms.com/english/index.html.

Thanks to everyone for their warm words and very helpful thoughts on the study and EVT. Barb, to address your question, I don't think that the MOMS study is specifically different from the past 10 years of prenatal SB surgery (other than whatever innovations they've incorporated during that time), but basically the surgery now occurs only within the parameters of the study, which is sponsored by NIH (in other words, you can no longer get the surgery unless it's through the study). We still have many hesitations about the risks and benefits -- others have touched on them here -- but we look forward to meeting and speaking with the study team in depth to learn more. We'll keep you all posted.

Best,
Emily

[Barb]

Interesting----years ago if you could pay, you could get it without the study. Funding was a problem because hardly any insurance covered it. I don't know what I would do. I am honestly thankful that we didn't know with C until he was born. :)

Dodger-nice to see you around. I was getting worried about you ;)

[Dodger67]

Hi Barb
Yes I was out of here for a bit...
Work and family issues have kept me very busy the last few weeks.

[Barb]

Well, glad to see you back!

[mommy2cnj]

I don't know what I would do. I am honestly thankful that we didn't know with C until he was born. :)

I was told while carrying my 2nd child having SB that if I wanted to have the inutero surgery done, I'd have all expenses paid, wherever/whatever I needed to do ... this was told to me by relation.

I chose against doing so, only because I already knew there were many risks involved just in birthing a child with SB; I didn't want to add insult to injury (no pun intended....criminate me if you wish....'tis only my choice made at the time that I'm sharing now....:))