Jo's Experience

For this entry I think I'll let someone new take the reins. Her name is Jo Buck, a woman with SB who recently gave birth to a beautiful baby boy. She has written a document about her pregnancy, labor and delivery experiences and I'd like to share it with you (with her permission, of course granted). It is a very well written personal account, while at the same time very informative for other SB women out there considering pregnancy. So without further ado, heeeeeeeeerrrre's Jo!

Pregnancy and Spina Bifida

Folic Acid

For women with spina bifida, it is vital that 5mg of folic acid is begun at LEAST 3 months before trying to conceive. You can get a prescription from an OB/Gyn or your family doctor. You should also up your intake of green, leafy vegetables, and eat foods fortified with folic acid.

Your siblings, if you have them, must also remember that they too, need to be on top of folic acid. Because of the family history of spina bifida, they and their partners run the risk of having a child with it. In fact, they actually have a higher risk than you, yourself do.

Our son was an “oops it’s a miracle” baby because we were actively trying NOT to get pregnant, due to my fears of passing on the spina bifida. I was therefore, not on ANY form of folic acid. If only I had been prepared, I would not have spent the first part of my pregnancy hysterically afraid of what me not being on folic acid before conception had done to my son. I do want to add, that at my first OB appointment I was put on folic acid and it made me very nauseous

UTI’s

UTI’s are very common during pregnancy. Sterile cathing is necessary. Using new catheters each time, along with washing hands before and after, and using gloves can cut down on the occurrences.

If you are not already, you may find it necessary to be on a low dose of antibiotic for the duration of pregnancy.

My first symptom of a UTI, after the morning sickness stopped was vomiting. If I threw up, I knew I had a UTI. Especially with self-catheterization, keeping on top of UTI’s is a necessity.

UTI’s during pregnancy are especially dangerous because UTI’s can lead to dehydration, which can put a woman into pre-term labor.

During my pregnancy, I had UTI’s so severe I actually bled. For a pregnant woman this is the most terrifying experience in the world. You see blood during pregnancy, when blood should not be there, and your heart will hit your throat. It is very important to contact your Dr. if you see ANY kind of blood.

Mobility

I typically walk unaided, and for the most part, I did until I was about 5-6 months. Then I began using a wheelchair for walking long distances. By 7 months, I was using one even when I was at home. You may be lucky and never have to go to this extreme. It mostly depends on the position/size of the baby, and your own center of balance.

I cannot speak for those who walk with aides, because I do not, but it might be a necessity for you to do so earlier.

I was very much afraid, that my mobility would be hindered once my son was born. However, it only took a few days to get used to walking without the baby belly being in my way. I also want to say that I had this fear that the pregnancy would do damage to my spine and I’d end up paralyzed, I don’t know why I was afraid of that, but I was. I’m happy to say that I’m almost completely back to what I was like before he was born.

Incontinence

I think it is safe to say, that most of us have had episodes of incontinence in our lives. If not, consider yourself blessed. Starting from about the 4th month on, I had zero bladder control. I found it a wise investment to get my hands on disposable underwear and use those. Even knowing about the incontinence I had a scary experience that I think I should address.

Near the end of my pregnancy, I had a slight scare. I woke up, and as I stood my son kicked me I was immediately soaked. It was far more than a normal “accident” and I ended up thinking my water had broken.

It had not, THAT time. However, due to the incontinence I was experiencing, when my water DID break, I blew it off. If you have a gush of fluid, bigger than normal, during pregnancy, get checked out! I ended up on antibiotics during my labor because I could not be sure when my water had broken exactly.

Constipation

Constipation is an issue many women face during pregnancy, for us, many already face it on a daily basis and pregnancy can make things worse. Water intake is very important, not only to keep yourself hydrated but to keep constipation from getting severe.

I have always dealt with constipation, but on one occasion I can think of, it got so severe that I was having extreme back pain. This was a new occurrence to me. I have never had it so severely that it made my back hurt, and I found it frightening.

Some stool softeners can be taken during pregnancy, but for me this was not an option, because I also have Irritable Bowel Syndrome, a stool softener would lead to diarrhea, which could then lead to dehydration, and pre-term labor.

Shunts and Pregnancy

This was something I faced, and I think it is important to pass along. For those of us with shunts, it MAY actually be better to go the route of vaginal delivery. Of course, this is best discussed with your doctor.

For me personally I had a c-section scheduled, because I have always been told this is how I had to do it. However, one of the obstetricians I saw during one of my hospital stays actually suggested I try a vaginal delivery: BECAUSE of the shunt!

It never occurred to me, that I was risking my shunt becoming infected, if somehow the incision were to be infected. Not to mention having my bladder nicked during the surgery.

When I went in labor on my own, I ended up choosing to try a vaginal delivery, and though it was only supposed to be a “trial”, I’m glad that it worked out so that I didn’t need a c-section.

This is of course, a decision only you can make, along with your doctors. Due to the different body structures, c-section might be your only choice. You and your doctor will need to make the best decision for you and your baby.

Labor

This was my major fear. I was terrified that I wouldn’t know I was in labor. I don’t have a lot of feeling below the waist, even though I do walk. During one of my L&D (labor and delivery) visits I remember asking the nurse’s how I’d KNOW I was in labor. Her answer? “You’ll just know.” That was not a good answer, but there truly are no words to describe contractions. When I was 34 weeks along, I had an episode of threatened pre-term labor. I was feeling a lot of pressure, and it felt different and not right. When I told my OB this, he said “it’s just pregnancy pain, don’t worry about it.” Luckily, I trusted my instincts and went to get checked anyway. When I got to the hospital, I was 2 cm dilated and having contractions. Thank goodness, they were able to stop them.

A few weeks later when I actually went into actual labor, it was far different. I was having excruciating pain in my back. I’d had back pain the entire pregnancy, but nothing like this. The only way I can think of to describe it is, it was as if an elephant was standing on my back and driving a sword into my spine and twisting the sword. By the time I got to the hospital, I was 6 cm dilated.

I am extremely fortunate, that the OB who was on call, was the one who I liked, and who had suggested natural labor. He told me I could choose to go ahead with the c-section, or I could try a vaginal birth. I opted to try a vaginal delivery, with the understanding that it as a “trial” and that if it became necessary a c-section would be performed.

There were several instances when it looked like I would be getting the c-section I so desperately hoped to avoid, even though I’d had one scheduled. I was amazed that I was able to have an epidural, it was performed a bit higher than they normally do them. I will say, that it didn’t completely work for me, but it did take the edge off the contractions.

They figure I was in the beginning stages of labor for several days and didn’t know it, because I had grown so accustomed to the back pain, which is where my entire labor was felt. I never felt pain or tightening in my abdomen like I was told to expect. I had a relatively easy delivery” Active” labor lasted for 8 hours. I was told, however, that a second pregnancy would likely go faster, and that next time, if I so much as think I’m having contractions I must go straight to the hospital.

Things to Remember

1) YOU know your body better than anyone else. If YOU think there is something wrong you should trust your instincts and get checked out.

2) Don’t be ashamed if you jump the gun, and end up running to the hospital for nothing. It is always better to be safe than be sorry. Above all else remember “healthy mommy, healthy baby.”

3) I didn’t touch on this above, but if you are offered pain medications, don’t be afraid to take them. Your doctor/L&D nurses do know what they are doing and will not ever give you something that is dangerous to your or the baby.

4) Rest often, and don’t push yourself to do more than you are able. Your housework can wait.

5) Ask questions about things you don’t understand. If you aren’t satisfied, ask until you are. Your health and your baby’s health is what matters.

If you can think of anything I’ve left out of this please feel free to ask, or let me know. I can only speak from my experience here, but I hope you’ll find it helpful