Need Information about Spina Bifida

Personal Experience ^ | 3/12/09 | Me

[CharlieOK1]

My purpose for posting this thread is not for sympathy or attention, it is for information. My cousin and his wife just learned that their baby has Spina Bifida. They are five months along, and are obviously in shock.

I am very aware of the story of Baby Samuel, who was operated on In Utero and is doing just fine 3-4 years later from what I understand. My question is, how would someone go about finding a Doctor to attempt this procedure? I've learned the Dr's name in Baby Samuel's case. Are there others who do this? Is it realistic to try to reach out to the Doctor in this case? I would do everything I can if I thought there was hope.

[al baby]

Have you tried goggle ?

[al baby]

Prayers for the kid and family

[CharlieOK1]

I’m hoping someone with personal experience may respond to this.

[silverleaf]

I think once the shock of finding out their child has a physical challenge settles down a bit, they may be calmer.
Their child should have a normal or better IQ and a very happy life. Hopefully their treatment options are many and advanced given that this is a daunting but not uncommon birth defect (I hate to use the term “defect”)

I would call St Jude's Children's Hospital in Tennessee and see who they suggest the parents talk to.

National Chapter of Easter Seals would be another contact to find out who they might talk to about treatment options.

Blessings on them all.

[Cicero]

Not sure how much help it would be, but there is a Spina Bifida foundation online:

http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2642323/k.8E10/Spina_Bifida.htm

Also, if you have a really good doctor, you might consult him to see what he recommends.

[phoenix07]

If you are located in Columbus, OHio, get in touch with Columbus Children’s hospital. Dr. Ed Kosnik is a pediatric neurosurgeon there - and a true savior. Although my child had a different congenital condition, a friend of mine had a child with Spina Bifida and he and his associate, Dr. Scott Elton, were able to help them. If you are in Phoenix, get in touch with either Phoenix Children’s hospital, or the Barrow Clinic. In Cleveland, the Children’s hospital there or the Cleveland Clinic. I have heard of in utero surgery being done to correct congenital conditions of many kinds. My prayers are with the child and parents.

[borntobeagle]

Definitely look at Cleveland Hospital as well as Mayo.

I am not an expert other than having being told one of my twins had Spina Bifida before she was born (she was born healthy). After the shock, we just accepted the fact of the “defect” and planned to do whatever was necessary after she was born.

Being that mom is already in her 5th mo., it's a little late, but please tell her to keep taking Folic Acid.

[TSgt]

[CharlieOK1]

Thanks, I will do some research. I appreciate the info.

[silverleaf]

Actually just doing a quick search the March Of Dimes is a pretty good starting point for suggestions for medical references-

St Jude’s is more focused on cancers.

[Question_Assumptions]

Often caused by too little folic acid, which is why taking vitamins during pregnancy (designed to be taken during pregnancy) is a good idea.

[BunnySlippers]

Google, goggle, either is a good place to start.

[CharlieOK1]

Of course I know I could just type Spina Bifida into Google. I post on Free Republic in the hopes that someone with personal experience may respond to this.

I'm going to assume that the people that just respond with 'check google' aren't trying to be rude. So, have a nice day.

[heartwood]

Where the opening is on the spine, and the degree of exposure of the spinal cord will help determine whether to risk fetal surgery. A low opening without protrusion of the cord would be less likely to produce serious disability and might better be addressed after birth.

Some children born with spina bifida do very well indeed - I read about a young man who played varsity football.

My prayers for your cousin’s baby and for him and his wife as they face this crisis.

[Born Conservative]

I don’t have any personal experience with this, but this page from CHOP (Children’s Hospital Of Philadelphia) may be of interest: http://www.chop.edu/consumer/jsp/division/generic.jsp?id=89098

[Roccus]

The Shriners helped a family I knew who’s child had this. Here’s a directory of Shriner’s hospitals

http://zamora-dsc.tripod.com/ZAMORA/hosp.html

[CharlieOK1]

Please know that if I don't have a chance to respond to each one of your replies, that I am closely following this thread, taking notes and truly appreciate everyone's input.

Thanks so much!

[borntobeagle]

I apologize for other people's callous response. I know you and your family must be very worried for your cousin and baby.

Hopefully a good Dr. among our FRiends here will come across this and give you more info as I know you are reaching out in any way possible to find some information and solace.

I'll make a mental note to pray for you and your family.

Please do check Cleveland Hospital and Mayo as starting points, as well as some of the other hospitals fellow FReepers have recommended.

[CharlieOK1]

thanks beagle. That was my hope. I know people from all walks of life post here, so you never know, maybe a pediatric surgeon or something like that may see it. Or maybe someone who has had this experience themselves.

I do appreciate everybody who is trying to help