Diagnosed

[Lollygirlie1]

Greetings,

I'm currently 19 weeks pregnant with my first child, and two weeks ago we found out our baby has spina bifida and a probable heart defect. We had an amnio done and the chromosome test came back normal, which means no trisomy disorders that they could see. Our genetic counselor said that there may still be a "syndrome", but we won't be able to tell until after the baby is born or an autopsy is performed. I've spent the past week freaking out because I had no new information. We have an ultrasounds scheduled for tomorrow. I've been reading all the posts here and on the spaa website, but none of them really talk about if a sb baby has other complications. Part of the problem is we don't know much about the heart defect, because the baby was too small for them to diagnose. I guess what I'm looking for is if anyone knows any information about survival for sb children with other problems? :2aa:

[leigh828]

hi, and welcome to the site! i'm sorry that you are going though all of this. I am currently 22 weeks pregnant and was also told at 19 weeks that our baby has sb. i don't have too many answers either, i just wanted to let you know that you are not alone! good luck with your ultrasound tomorrow, i'll be thinking of you!

[Dodger67]

I've never heard of heart defects specifically associated with SB.

But as fate would have it I also had a heart defect. A relatively common one (Bicuspid Aorta Valve) that suddenly became obvious about 3 years ago. Until the valve actually starts failing (usually in one's early to mid 30s) it remains undetected in the vast majority of people who have it. The offending valve was replaced with a state of the art ceramic substitute! So I'm perfectly ok now.

One problem associated with SB that is very common is a foot malformation called "clubbed feet" this is usually fixed with casts/splints and in severe cases, minor surgery (of course "minor" has to be taken in the context of having SB).

Regarding your question about "survival for sb children with other problems":

Neonatal mortality in cases of lumbar or sacral SB is in fact very low if proper medical care is available. Its really not worth worrying about. Hydrocephalus (extremely common with SB) has its own factors but I have no experience of it.
What the consequences of the heart problem are- until it has a name - is a complete mystery and any discussion of it at this stage would be irresponsible speculation.

We're all rooting for you and your son for tomorrow.

[angel]

I don't know much about heart problems but i have sb and had a heart murmmer from birth until i was in my 20's. I finally grew out of it (so the doctor said) my son who has SBO also had one until he was about 10 years old and then it was no longer detectable.

Good luck i wish i had some answers for you more than this. Like dodger said the survival rate for SB is not something i would worry to much about. The survival rate has soared over the past 40 years!!!

Angel

[Barb]

Cart has a heart murmur too....interesting that it seems quite a few here do.

I just want to jump in and say that so much of the information that parents recieve during the neonatal process is a guessing game. Until the baby is born, it is impossible to tell. It seems that kids with sb do sometimes have 'other' conditions. For instance, my son, is also on the autistic spectrum. I often wonder if our kids weren't watched as closely as they are if some of these diagnosis they are given would just be chalked up to normal childhood. I guess what I mean is that they are constantly under a miscroscope and people are looking for things wrong with them. Who knows if Dodgers heart issue is something he had for a long time before someone found it.

[Bigwilli]

Hi Lolly,

Welcome to the site! I know what your going through. Our daughter is 3 months old with SB. Basically, the doctors scared the hell out of us at first and I had to find alot of info initially. Overall our daughter is doing great and outside of a shunt you would never know she had SB. She doesnt cath and is moving her legs great. She did have a small heart murmur that doctors say was normal and would go away after a year. Please ask anything as I went through this and fee you. I'll be praying for you!

[Dodger67]

It is indeed a congenital defect - but it has no effect or symptoms until the valve starts to collapse.
For 30 odd years it works normally and unless one has a heart sonar for some other reason there is no sign of it. Once the valve starts failing it becomes obvious.

[LisaJoy]

Lolly,

When your baby is born, it is very important that s/he be followed in a multidisciplinary clinic if possible. In addition to hydrocephalus, most people with sb have neurogenic bladder, which requires close attention by a urologist. Back in the 60s & 70s, before self-catheterization was introduced, renal failure was a leading cause of death for children with sb.

The other thing to keep in mind is that physicians and surgeons are notoriously pessimistic, in part because of their fear of litigation. Nobody sues because things turned out better than expected!

This forum is a great place for support and information -- if I'm remembering right, there is a thread somewhere with a number of recommended books.

Keep us posted!

Lisa

[joybell322]

Welcome! My daughter with SB (L4-6) also has many related problems, though not with the heart. She's doing beautifully though at the moment, we are battling bowel incontinence. She is six now. Look at her pictures. I know it's all difficult to take in at first, but I really encourage you to read up on SB. Start with Living with Spina Bifida - a truly amazing book, and you can order it from this site. Take care - just so you know - of my 3 children, Lizzie (SB) has the most personality!

[lrllnd1]

Hi, I am due with my second child April 11th and she has SB the lesion is L3 to L4 from the ultrasound. I was wondering if the type of SB myelomeningocele or meningocele can be determined from a prenatal ultrasound or is it impossible to tell the type before the baby is born? The Dr says the sac sppears to be just fluid with no nerve tissue at the present time.

Thanks

[dahliafaolan]

Sometimes it can, sometimes it can't. I think it depends the type of ultrasound available. I have lipomyelomeningocele and they didn't find it in the ultrasound. But then again, nothing is foolproof.

[Dodger67]

I agree with Dahlia, diagnosis by ultrasound is not very reliable though it does seem to get better with time - later in pregnancy is more accurate. But you'll only really begin to know what you have to deal with when your baby is born. Even then there is no such thing as the final answer.

[Gymp]

I was born with a heart defect along with Spina Bifida.I was born with 3 holes in my heart (don't know the proper terminology),a blue baby.That was fixed at the age of around 4 (about 1960).Come to think of it,I was one of the first kids in N.America to have the surgery to patch up the heart and it was published in some medical journal.

About 6 years ago I went for a physical examination and they found I also have Atrioventrical Block,they figure it 's congenital and since I'm doing fine they're leaving it alone.

Gymp

[Annelle]

Hi hon sorry you are having to go thru all of this - my daughter is 31 and I thought they would be more understanding of new parents by now but when she was born they thought she had an imperrfered (SP?) anal opening and a heart defect because her heart was somewhat floating. She has very severe Spina Bifida open at birth. She did great after initial shunt surgery - each child is so different you can't go by what others do. It is a constant learning experience but with love and understanding your child can live a happy life. I have heard of diagnosis before that turned out not to be the case at birth. It is good you are seeking friends and advise. Melissa is in a wheelchair and rides horses, bowls and plays baseball. She was also a champion wheelchair racer when she was still using a manual chair. She has brought us a new understanding of life and struggle. We have fought for many changes in the system which I hope paves the way for some of the newborns.

Hang in there!!!

Let us know how we can help and how things are going. We do care!!

[dahliafaolan]

That is so awesome that your daughter is able to do all that. I used to play baseball when I was a kid and race when I was a kid, but the doctor suggests that I don't do either any more due to the rods in my back. I still bowl though. I'd love to be able to ride horses, but I can't afford to join any of the riding clubs around here. How does she sit on the horse? Does she have a special saddle? I ask because I don't have any control over my legs any more. That and my balance...well, to put it politely, it's laughable. So I'm looking into things that might be able to counter that problem.

[Lisa Joy]

Annelle -- Would you invite Melissa to join us on this forum? One of the great things about it is that we get perspectives from both parents and from people with sb!

Dahlia -- You should check out this website for the North American Riding for the Handicapped Association:

http://www.narha.org/

A lot of times these organizations serve mainly children, but maybe you could find an affiliate in your area that would give you an opportunity to try it out. I believe they have specially designed saddles, because a lot of the people they serve have balance issues (such as people with cerebral palsy or muscular dystrophy).

However, you should also check with your doc first and I'm guessing an affiliate would require a release anyway.

I suspect some people involved in these organizations might be a bit patronizing -- but on the other hand, the work they do gives people access to recreational opportunities that they might not otherwise have.

Lisa

[Lisa Joy]

Annelle -- Sorry; I see from your other posts that you have tried to get Michelle to speak for herself. Keep trying -- and, hey, Michelle? We know you're listening! We'd love to meet you.

Lisa

[jessiesmom12202]

On June 16,2008 I went in to have surgery on my right wrist. The hospital did a UPT on me which is done on any female of child bareing age who is going to have surgery. An hour later the dr came back in only to inform my that i was pregneant. I then explained to him that something had to be wrong because i was on the birth controll patch, and had not missed a cycle. The DR than offered to do blood test to make sure.i said yes please do. thirty minutes later he came back and said yes you are pregneat. So no surgery was done.

June 30,2008 I made my first OBGYN aapointment with Dr, B. After talking for some time and going through my medical history Dr.B decided to do an ultra sound, and an HyperCoag Panel. The ultrasound showed that I was 10 weeks pregneat. At this point i was confousied because i was on the BC Patch and still had not missed a cycle.I was also put as High Risk, so DR appointments every two weeks.

July 14,2008 Went back to the Dr.B all of my blood test had come back, was told that i have a blood diorder called MTHFR. I would have to take shots of Lovenox everyday up to six weeks after i have the baby. I was also put on Metanex, which is high doses of Folic Acid. Dr.B also made me an appointment to see a hemotologist.

July 28,2008 Back to Dr.B all is well.

August 11,2008 I had two appointments one with Dr.B then with the hemotologist Dr.H. at the first appointment I found out I was haveing a boy and every thing looked good. was able to leave and go to work. On to DR.H, everything went good with him he just increased the metanex to twice a day.

August 25,2008 went to see Dr.B everything was good.

September 8,2008 Had an appointment with th NP J all was well baby looked good.

September 11,2008 I was haveing really bad paines on my left side. Called Dr.B to see what i should do. They had me come in to see Dr.B. come to find out the baby was sitting on my left syatic nerver and was causeing me really bad pains. Just to make sur they had me do an ultrasound. After the ultrasoun i was placed back in my room and told the DR would be back in to talk to me. About 10 min. later that is when Dr.B told me that my baby has SB. I don't think i heard much after that. He made me an appointment with a OBGYN Specalist DR.G

September !8,2008 Dr.G confirmed what Dr.B had said about my baby...That he has SB

So here we are today...waiteing to give birth.....

I am so glad i found this site because i think i would still be lost on what Sb really is without it.

we are deliverying our baby in six days and things are looking great....

my best advice is to get in touch with the shriners hospital near you
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[cutie patooties mom]

Hi Donna,
I am so excited for you that it is almost time. All of the waiting and wondering will be over and you will have your beautiful miracle in your arms. My prayers are with you.
Bronwyn

[LisaJoy]

How exciting! Good luck, Donna! Let us know how things are going as soon as you can (or get someone else to sign on here and give us an update -- you are going to be a little busy!)

I'll be praying for you and the baby.

Lisa