Sunday, October 09, 2005

Spina Bifida Pregnancy - Big Deal or Big Void?

Am I making way more of a big deal out of things than the situation actually warrants, or is there truly an incredible lack of information available for women with spina bifida seeking advice on pregnancy, labor and child care? Granted, my own pregnancy went smoothly and was handled very professionally by my doctors. But still - before I became pregnant it would have been nice to have at least been able to read some first-hand accounts of spina bifida pregnancies, or to read up on the latest research and scientific findings on the subject.

As I've written here before, I found no information of this sort available to me when my husband and I were considering pregnancy. Even my doctors - professionals who either specialized in spina bifida, bone structure and/or high risk pregnancies - were not able to give me and my husband any concrete answers to our questions regarding what a pregnancy would entail for me in my situation. I'm sure the fact that spina bifida is so multi-faceted - so different for each individual who has it - does not help to form any sweeping generalizations for any medical issue, least of all pregnancy and childbirth. But answers such as "sure you can have a baby - we'll just have to see as you progress what will happen" are not altogether comforting messages to process.

What did I find out back when I first became pregnant? Well, for starters, I was told by both my neurologist and OB/GYN (whom had discussed my case with each other) that I should remain on my Carbatrol anti-seizure medication throughout my entire pregnancy. The ill-affects to the fetus of having a seizure while pregnant, they told me, far outweighed the increased risk of disability to the baby as a result of the medication. Fine - both my doctors agreed and I knew that I would be closely followed throughout the pregnancy to see that my medication levels did not rise too high. And at 16 weeks gestation I would have a Level II ultrasound to check on the health of my baby. I trusted the decision and stayed on the Carbatrol.

But you know what's now disturbing? I now see a new neurologist whom I love and he has agreed to monitor me as I go off of my medication altogether. He said, though, that if I had decided to remain on the Carbatrol and if I then decided to have another baby, he would highly recommend that I switch to a different anti-seizure medication for the duration of the pregnancy. If I recall correctly, he said Carbatrol carried the greatest risk of spina bifida occurrence in fetuses. Hmmmm. VERY interesting. I knew I never really liked my previous doctor and that both my husband and I found him to be old fashioned and highly conservative in his medical thinking. Let's just say that this new information from my current neurologist doesn't do anything at all to improve my opinion of my previous doctor.

Anyway, I also was told that I should remain on my 4000 mcgs of folic acid that I had already been taking for the previous couple of years. The average woman with no history of birth defect in her family should take 400 mcgs/day of folic acid in order to decrease the risk of neural tube defects for her baby. But a woman with a family history of birth defect - or who has the defect herself - is to take the prescription dosage of 4000 mcgs/day to ward against spina bifida and other neural tube defects. I never had any disagreement with this decision and was happy to do what I could to increase the chances of having a healthy baby.

My OB/GYN also kept close tabs on me in terms of UTI's. Women with spina bifida are more apt to suffer from UTI's during pregnancy than healthy women. So, every time I went in for my OB/GYN appointments, I was tested to see if I had developed a UTI. Fortunately, I never did and I remained in general good health throughout the entire pregnancy.

Well, you can read more details of my pregnancy and delivery in previous blog postings here, but suffice it to say, it really all went very well. But that's just me. I've since heard from other women with spina bifida who have had very different experiences in pregnancy and childbirth from my own - both better and much worse.

It's high time there were some published studies done on the effects of pregnancy in women with spina bifida - even if it doesn't prove anything earth-shatteringly surprising. But maybe it would. Both outcomes would be interesting to discovery, I think. Just having some legitimate information out there for interested women to read, perhaps enabling them to feel more comfortable with what may lie ahead for them in their journey towards pregnancy and childbirth would be a wonderful thing.

32 comments:

Anonymous said...

my partner and I have been trying to have a baby now for a few months . My Urologist seems to think it will be very hard as I have a Mitroffinoff is there any other women out there with Spina Bifida who also have the Mitroffinoff that have had successful pregnancy?

Manda said...

I am 23 and SB. I have a healthy baby girl who is about to turn 2 in a few weeks. My pregnancy was just aweful!!.. I hade Hyperemisis Gravadarum :(

Anonymous said...

I'm so pleased to have found your blog!I am 29 and from the UK. I just found out that I am pregnant, which has come as a surprise to both my husband and I. My GP has refused to scan me prior to 12weeks and is not in a rush for me to see an Obstetrician. I have an appointment for a private scan but our NHS wants to treat me like a 'normal' pregnancy with no extra guidance for my personal circumstances. I am now taking Folic Acid (5mg) and hope it's not too late. I also fear the complications that may follow. I do feel very let down by the lack of information out there. But I do feel comforted by your site. Thank you!

Heather said...

My name is Heather and I am 25 years old living with spina bifida. I was born with myelomeningocele and truley consider myslef a miracle. I have had several spinal cord and orthopedic surgeries and amazingly I am ambulate and have bowel and bladder continence. My mother was told that I would never be able to walk and would be incontinent amoung many other problems, etc but I beat the odds. Today I work as a Registered Nurse full time and I am 33 weeks pregnant with my second daughter. My first was born 39 weeks gestation via C-Section and is a healthy 3 year old! I didn't have any problems getting pregnant or complications during that pregnancy. This pregnancy has been a little different...I was very sick the first half of my pregnancy. I have had multiple UTI's (hx neurogenic bowel/bladder) that have been treated and my chronic back pain has gotten increasingly worse. They have decided to take me out of work the remainder of my pregnancy. Overall I have had 2 great pregnancies resulting in healthy baby girls! You can have spina bifida and absolutely have the family you always dreamed of. Please find an OB/GYN that you trust and has the resources available for someone with spina bifida. I know every spina bifida case is different but there are always new technologies and resources available. Good luck to everyone!!!

Anonymous said...

hi im 19 years old and i had spina bifida but am able to walk and talk and learn like a normal person i do have back probles once and awhile but if i sit down ill be fine.. im stressing out now because im pregnant and im having horrible horrible back pains and im just about 3 months and my back pais get pretty bad sometimes. Do you think that i can have a normal child birth or do ii have to have a c section im afraid im gonna die at child birth or im gonna get paralyzed or something im terrified over that, do you think i have chances of that happening if i have it naturally?

alisa monard said...

hi my name is alisa monard im 22 well i got spinal bifida as well i got a bladder and bowel problem too the doctors told my parents i was going to die after 2 weeks but here i am at the age of 22...well i just got married in may of this yr and me and my husband have been thinking of having a family of our own i love kids and would love to have one of my own can someone tell me what to do i know and i believe in my heart that our lord in heaven didnt not bring till today for nothing i know that if i want to have kids he will give me that but i just wanna hear from all the other spina bifida womans out there is it dangerous please let me know thank u...

Kelz2Lovelee4u said...

Hello I am 29 years old living with spina bifida.I am wheelchairbound and can't feel from the waiste down.my boyfriend has 3 children but i want kids of my own.I just went to the obgyn for the first time and she put me on prenatal vitamins and she told me to do an basal temp chart.has anyone had to do that?if so have you found it difficult/ stressful to do?I really want kids before 31.Any advice would be helpful,thank you!!

Anonymous said...

I am not sure if anyone can help me or not. I am a 35yr old female that was given up for adoption out of Madelia, Minnesota but the adoption agency was in Minneapolis. I found out that my birth mother had spina bifida and have always wanted to find her and whatever other information that I can find of her. I, myself do not have spina bifida however I do have back problems and the doctors are still trying to figure out if the back problems that I have is from my family health or my weight issue that I had faced most of my life. I had weight loss surgery back in Dec 2004 & now have a 4 year old son and I just wanted to know if he is going to experience back problems too or if he is lucky not too. I have so many questions and feel such a void in my heart because both of the adopted parents are not deceased and were never able to give me the answer that I was looking for or didn't feel the need to so if anyone out there can answer my questions or a least point me in the right direction, please contact me via email at luvloneytunes1976@gmail.com. I am hoping someone out there will be able to help me on this matter as I still search for my birth families. We have no one else left in my family nor my husbands family and it tears me up that my son doesn't have a grandparent, brother or sister or anyone else he can turn too in the event something happened to me or my husband. I was also told back in 1976 there was a waiver that was signed regarding the adoption but have not found out it that was true or not and also I have contacted the adoption agency where I was told that I was adopted through and still not able to get any information from there unless I have at least 10,000 dollars to pay them and doesn't even include the chance of me finding my birth parents. So again, I am asking if anyone out there can help me, I would greatly appreciate their help. Thank you for your time and have a nice day.

Anonymous said...

Hi, i Have Sb As Well, And have been trying to get pregnant now for a while, i thought it had something to do with Sb, But when i read this blessing you had i now know its not that and women with Sb CAN Concieve. What is some advice to help get pregnant ?

Anonymous said...

Hi, Im 21 and i have Sb As Well And i have been trying to get pregnant for a while now, what are some suggestions on maybe how long it may take to get pregnant or jus advice in general about Sb

sbgal said...

im wondering the same thing as anonymous , is there any way youd be comfortable talking to those who arent comfortable asking you questions in a public forum via email?

Lindsey Jones said...

Can someone offer me any advice? I am a 26 year old female with a lypomylomeningicle. I can walk, have full bladder and bowel control and have no problems in life. I got married last year and mybhusband and I are keen to start a family. We are awaiting an appointment from a geneticist to see what the risks are of me passing on spina bifida. Anyones comments or stories would be great, thank you.

Dana said...

I am a 42 year with spina bifida. I gave birth 18 years ago to a beautiful son. He is in perfect physical health and will play basketball in college next year.

Pregnancy was rough because of my small stature and chronic kidney issues. I suffered from preeclampsia and delivered my son at 35 weeks.

I have discovered that ob/gyn doctors now know more about treating patients with my unique health issues than they did 18 years ago! If anyone is considering having children, I would highly recommend finding a great perinatologist (a physician that specializes in high risk pregnancies) to help you!

Anonymous said...

Hello,

I am 29 years old and have Spina Bifida. My husband and I just found out we are expecting our first baby and my first OBGYN appt is scheduled in about 2 weeks. I am ambulatory and don't use a wheelchair, however I have incontinence issues and regularly cath. I also am on the medication Detrol LA to help with overactive bladder. Because I am pregnant, I have been advised to discontinue my use of Detrol LA. Because of this, I am finding it extremely difficult to keep my bladder under control, causing frequent leaking throughout the day/night. Other than keeping on a regular schedule of cathing, can anyone that may have been in a similar situation offer any advice? Thanks in advance for any insight!

Anonymous said...

Hi, I also have a Mitroffinoff and I'm 16weeks pregnant, everything so far is looking healthy but we won't fully know until my 20weeks scan, hope this helps you.

Ingeborg said...

This is fantastic!

Anonymous said...

I'm about to try and start a family in the next few years and having spina bifida is stressful enough, but not having any firsthand accounts of a woman having it and carrying to term has been frustrating. I am so glad I found your blog.

Anonymous said...

I would like to speak to somebody who has spina bifida who have had children, as i am 30 years old and have spina bifida and i dont know anybody else who has it, and have couple of questions about being pregnant with spina bifida, if somebody could help me out with this that would be great. my email is citychick95@hotmail.com Kelly

Anonymous said...

I am 29 years old i was born with spina bifida also. I am now married and pregnant with our first child.

I am absolutely terrified. I cant eat I cant sleep. I keep having nightmares that my baby will turn out like me. I have weird symptoms too like small fevers nightly.

This leads to more fear for me. I wanted to speak to anyone that can give me some advice. Some help so as to at least be able to calm down :( as my doctors arent being much help..they dont know what its like in our situations...

lissette ruano said...

Hi I'm a person with spina bifida I'm 30 years old me and my boyfriend want to have a kid. I hear that at this age is hard to get pregnant is that true what other options do I have in order to get pregnant

lissette ruano said...

I'm 30 years old woman with spina bifida trying to get pregnant will be hard for me to achieve it at this age and have a disability

Yasir Raja said...

Hi,
Hope you good my wife is 2 months pregnant with Spina Bifida.
If you need any help or you can help us
Regarding pregnancy with spina bifida.
Yasir_msd@yahoo.com

Megan Ewing said...

Hi my name is Megan and I am 23, also living with myelomeningocele. I was also blessed with onky having 1 surgery at birth and being able to walk even though the doctors told my parents i would never be able to. My first pregnancy ended in a miscarriage at 6 weeks. I am now pregnant again and hoping for a healthy baby. Reading your post has really made me stay positive and I am more confident that I can have the family that I have always wanted. Thank you for sharing your story!

Megan Ewing said...

Hi I am Megan and I am 23 years old and I also have myelomeningocele. Reading your post has really brightened my outlook on this pregnancy. My first pregnancy ended in a miscarriage at 6weeks. I am now pregnant again (2 months later). I am praying this baby will stick and I will have a healthy baby!
Thank you for sharing your story! It has really put my mind at ease a little bit.

Anonymous said...

Don't consume caffeine

Anonymous said...

Hi I'm 18 years old and I also have spina bifida and myelomeningocele, I am so happy to hear that there are other women out there that have the same disability as I do and have accomplished so much. I also want to become a nurse but because I don't have money to pay for college I wanted to get in a nurse program in high school but they told me no because I could squat down and other things. Now I'm no longer in high school I am getting my GED because I missed so much school the first two years that they wanted to put me back in sophomore year but I decided to get my GED instead but knowing that you Heather have becomes a registered nurse gives me hope I'll be able to as well. It also comfort me to know that all of you with spinach bifida have been able to get pregnant hopefully I will too.

Anonymous said...

Hi Heather I'm 18 years old my name is Belen I am so happy to hear your a registered nurse I also want to be a nurse or at least in the medical field I'm not exactly sure where yet. I wanted to take a a nursing program in high school but they told me no because I couldn't squat down and other things. Hopefully I will also find a career that will fit me and I am so happy to hear that many of the women here are able to get pregnant and have healthy sex lives that was also my concern because I can walk but I don't have a lot of sensation and some parts of my body are num. Wich has kept me from wanting to date anybody or be open to dating. But I am so happy to see so many women with spinach bifida doing so well.

Anonymous said...

Hi, anonymous! I don't know how long it has been since you posted, but if you are in the U.S. please look to your local Rehabilitation Commission. They will help you achieve career independence, including helping you financially with college. I suggest starting at a community college because of low cost, proving your stripes there, and then getting into a 4 year college with hopefully a scholarship if not at least financial aid. :) Good luck. People with SB can do anything, I have two college degrees.

Unknown said...

I also have SB and i am the proud mother of a 2yr old boy who also has SB, pregnancy was hell for me as i lost all independance, my partner at the time (im now a single parent) had to do everything for me, which i hated but i had a normal delivery with just gas n air, my son is my miracle as i was told i could never have kids x

Cass Verwey said...

I also have SB and i am the proud mother of a 2yr old boy who also has SB, pregnancy was hell for me as i lost all independance, my partner at the time (im now a single parent) had to do everything for me, which i hated but i had a normal delivery with just gas n air, my son is my miracle as i was told i could never have kids x

Ana V said...

hi.. how did yourr pregnancy go? did you plan to have more kids after that?

Ana V said...

So 11 years after writing this blog..I find nothing helpful on the subject.. except for your posts ☺
If anyone knows of any good books on the subject let me know! 😊