Thinking about having children

[catlover]

Hello,
My husband and I are thinking about starting a family. I have Spina Bifida and I am concerned about the chances of passing it on to my child. I went to my doctor and he has me on 5mg of folic acid. Is this enough? I have so many questions, do most people carry to full term, will I be on bed rest, etc. I am being referred to a high risk doctor during pregnancy. I am able to walk, however, extra weight always makes life difficult for me, especially as a school teacher. Is there anyone else in this same situation? Does anyone have any advice for me?
Sincerely,
catlover

[stellalatella]

I was fearful for years to have a child. I was certain that because I was born with SB (and an assortment of other unpleasant birth defects) that my children would be too. I have 3 sisters who are all just fine. The worst ailment they have is that they wear glasses! Me? I won the bad health lottery! Last year, I had a talk with my physician about my chosing to not have children because of my fear. He assured me that I would be fine and that the reason I was born with SB and the other birth defects was because my mother did not have an appropriate amount of folic acid before and during her pregnancy with me. (I was always SO CERTAIN it was because she was a heavy cigarette smoker!!) He said that I would be wise however, to see a genetic counselor to be certain to rule out any other potential issues. He even said that it wouldn't be too late for me to get pregnant at 45!! Well, I still have my mind intact and I can't see having little ones running around under foot at 50!! I have chosen NOT to have children, but that was my choice. Mostly fueled by my fear.

Please don't let your fear stop you from seeing a genetic counselor and speak with a GOOD obstetrician or two. I know for me personally, I have made the right decision simply because my health has limited me so much, or should I say to so little.... and the thought of having to get up early with kids or during the night scares the heck out of me.

On a closing note, my eldest sister did have 4 kids and they are all fine. She did see a genetic counselor before getting pregnant. I have thoroughly enjoyed her kids as they grew up and when they started screaming.....I handed them back over to her and went home to my nice, quiet home!

I wish you luck!
Stella

[Dodger67]

5mg of folic acid is a large dose but that is only part of the story. You and your husband must consult a genetic counsellor.

As far as mobility during pregnancy etc. you'll just have to "go with the flow".
Everyone's SB is different, it depends on the exact details of your paralysis and strengths and weaknesses - much of which you will only find out as it happens.
You may have to work from a wheelchair or even take extra maternity leave, starting earlier than "normal".

[Dodger67]

That is one of the great advantages of being the aunt/uncle.
Faulty babies are simply returned to the manufacturer for repairs!:Banane21:
Unlike a car that leaks, smells or makes the wrong kind of sound, it doesn't cost you a cent!

[angel]

Hello,
My husband and I are thinking about starting a family. I have Spina Bifida and I am concerned about the chances of passing it on to my child. I went to my doctor and he has me on 5mg of folic acid. Is this enough? I have so many questions, do most people carry to full term, will I be on bed rest, etc. I am being referred to a high risk doctor during pregnancy. I am able to walk, however, extra weight always makes life difficult for me, especially as a school teacher. Is there anyone else in this same situation? Does anyone have any advice for me?
Sincerely,
catlover

Hey,

I have spina bifida as well. I have an 11 year old son who has SB occulta. I strongly suggest you see a doctor before you get pregnant. After you find out you are pregnant it is to late for the folic acid to do anything as the SB is already presant at around 3 weeks gestation (or so i have read). I don't know if anyone can answer the bed rest question as i think it depends on how you handle the pregnancy, any complications etc. I was told i would probably be on bed rest however i was not. I walk as well and i thought the weight gain would be a huge issue for me because it does make a difference. Mine came on so gradually that it was easier for me to get used to the extra weight and i walked right into labor and delivery when i was ready to have him. I gained 27 lbs during my pregnancy. I carried my son to 37 weeks he was born preterm not premature. I didn't know there was a difference but there is a huge difference because he was fully developed eventhough i didn't carry him to the 40 weeks. Hope that helps

Angel

[catlover]

Thank you for all of the advice. I was told that I have to take the folic acid for a full 2 months before even trying to get pregnant. So, I should definitely see a genetic counsellor?
This is all so new and scary to me.
Thanks again,
Catlover

[Dodger67]

Not only you, your husband must also go with you to the genetic counsellor.

In fact the list of your relatives who should get genetic counselling before having a baby are: brothers & sisters, uncles & aunts, first cousins, nieces & nephews and (in future) your children too.
They all have higher than "normal" odds of having a baby with a neural tube defect.

[MikeMac]

Hey:

I just wanted to share my experience. I am 34 years old and was born with Spina Bifida meningocele. I am lucky to have no health problems (just an awkward gait). Anyway, I lived my life afraid of having children in fear of passing SB on to them. My teenage years were quite happy for the most part but there were some definite downs. I just didn't want my kids to experience that. However, my wife insisted on having children. Today, I am so very proud to say that we have 2 very healthy children! They are the center of my universe!

The folic acid amount sounds right if I remember correctly. The best thing you can do is to take the folic acid as prescribed and enjoy all that baby-making!!! The Lord will look after you and your family!

[kidzrkool]

My understanding is that a lack of folic acid in the mother's diet is only part of the problem. There are women who take the prescribed amount and still have a baby with SB. What you or child does or does not have is in God's hands and He will help you to teach your child to deal, and you how to deal with those issues no matter what they are. It may have something completely unrelated to SB, Every child on this planet is here because God wanted them to be and we are here to do what he wants us to do. If you want your own child, have one. If not, adopt. Let God take care of the rest.

[Gymp]

I've thought many times that if I were to have children would they have SB like me.I don't think I'd have wanted them to go through all the surgery,embarrassment (due to continence issues) and all the other stuff associated with sb.

I ended up finding a wonderful gal that I'm still with after 12 years and she came with 2 kids aged 7 and 9yrs.These kids are now just getting over the 20yr. mark and I've treated them as if they were my own.Their real father was never around and never supported them in any way so I had that role in their lives to fulfill.I tried my best with them and have earned their respect.When they were teens I encouraged them to go out and have a relationship with their real dad as he is just that,their father.Last year the boy,my son wrote me a note and thanked me for always being there for them and for never talking down towards their absent father (he was always in and out of jail and a drug and alcohol abuser).It literally brought tears to my eyes.It wasn't always easy but I do consider these kids as my own and would stand up for them at anytime.I suppose this was the next best thing to having my own children without the worry of the SB.

When I was young I was always looking for someone to blame for the SB (I was an angry teen with a huge chip on my shoulder)and almost accused my Mom of taking thalidomide during her pregnancy with me.I ended up finding out that on my Dad's side of the family a lot of the sons had big time health issues and many died at a young age.In those days it was quite common to hide these kids in the closet so to speak and to never mention it.I have learned I do have male cousins with health issues over in Europe and to this day it's still kept quiet,go figure?

Gymp

[brodie]

hi. i am 31 with spina bifida. i can also walk. i have a beautiful healthy clever four year old little girl. i took folic acid the whole way through my pregnancy not before cos i didnt no i was pregnant . not adviseable though. only problem i had was high blood pressure and protein in the urine which the said could have been a kidney infection not pre-eclampsia. i was in hospital for rest on an off for the last two weeks cos of the high bp. But it was definately all worth it. we were actually wanting to have another but ive been diagnosed with arnold chiari malformation an am waiting to see how that goes. my siblings also have healthy kids. if you look up the stats there not that high of you passing it on to the baby. not much more than anyone else without spina bifida. if you look after yourself eat healthy an excercise as much as possible hopefully everything will be fine. good luck

[stub20]

I have got into a relationship, and we are now thinking about starting a family. how long before did people start to take folic acid?

[Lisa Joy]

Since no form of birth control is 100% effective (except abstinence!), every woman who is sexually active should take 4 mcg folic acid per day. For someone who has sb or has had a child with sb, I think a higher dosage is recommended; you'd have to check with your doc on that.

[angel]

I suggest you talk to a genetic specialist. My son has SBO and his genetics doctor (he saw after he was born) said that before i ever thought of having another baby he wanted to see me at least a year in advance of even planing to get pregnant so he could put me on massive amounts of folic acid much more than you will find in any vitamin or any store. The truth is some people with SB have babies with no health problems. A suprising number actually most i have heard of have babies with no problems. I had a baby that did have problems. It is a coin toss to say the least and you never know what side of the coin it will land on for your children. If it is of the most importance that you do every thing you can to prevent it then i wouldn't bother with a regular doctor i would go to a genetic counciler. If it doesn't matter either way then I would go with the folic acid over the counter.

Just my opnion

Angel

[stub20]

Thanks for all the help :)

[Stephaniec]

Hi all,

I'm so glad I found this forum, I have SB & having started to think about getting pregnant well atleast trying but I couldn't find any info out there of people having SB & their experiences of pregnancy !!

Going to have a good auld read & hopefully will be back to tell you how I'm going xx

[LisaJoy]

Welcome aboard Stephanie!

[stub20]

I was just wondering if anyone from the UK knew anything about the costs for genetic counselling, or whether its possible to get the advice from a specialist on the NHS?

[kellymumof4]

I was given genetic counselling on the NHS as i have 2 children one with SBO and one with SB level 3/4. If you have a talk to your Gp they should sort something out for you.All 4 of my girls have a 10-15 per cent risk of them having SB children themselves my oldest who is 12 will be goin as early as 14-15 years as the genetics people want her to know shes at risk and she will need to take folic acid ( i,m hoping its many years before she plans on making me a grandma!!) But its like they say kids are having sex early these days so best to start while shes young.

[angel]

Kelly,

I think it is a good idea that you are aware that kids are having sex early even those with SB. Many people said that they thought it was sad because no one would want me. My mom knew better.
I remember he words when i hit my teen years. She basically shot straight with me and said "Men are men, some men will have a problem with the way you are and some won't. She added that even half of the ones that would have a problem would still sleep with you if given a chance.
She was right men are men and it is sad when girls are blindsided because they weren't expecting any kind of sexual attention.

Angel

[janjanwhit]

I have just started on 5mg of folic acid per day. The doctor thinks I am crazy for going on it because I am on birth control. I plan on taking it until my husband gets fixed! I cant in good conscience have sex with out taking it. Imagine if I did accidentely get pregnant and wasnt on it! I dont know if it would help or not as I took 0.8mg and still had a son with sb, but I think taking it would make me feel better inside in the instance that it does happen again.

[canadian mom]

Are there any ladies on this forum that are part-time or full-time wheel-chair users that have had a baby? I know of a yound lady that recently got married, who is thinking about having a baby. Her concerns are about being in a wheelchair and carrying the extra weight of a baby (chance of skin breakdown), and if she would be put on bed rest for a lenghty time.

Do any of you have any advice for this young lady? Thank you in advance!

Marsha