Back in the spring of 2000 my husband and I lived in a cramped, musty basement apartment from which we were itching to escape. As newlyweds, married only 6 months at the time, we were excited about moving forward with our shared lives into a bigger living space that we could call our own. Furthermore, we wanted a larger house where we’d have room to start a family.
Finding our perfect house took awhile. But we finally did – in an old New England farmhouse with plenty of room and a nice, warm feeling about it. We signed our closing papers in the autumn of 2001 – on our 2 -year wedding anniversary.
Getting ready for a baby, however, took a little more preparation and a little longer to accomplish. We began by researching as much as possible on women with spina bifida having babies.
We wanted to read whatever we could to find out how well others in similar situations were able to get through the physical demands of pregnancy and childbirth.
Well, the bookstores and internet searches turned up empty-handed. I couldn’t find any studies, research or other publications on spina bifida adults and pregnancies.
So, after this disturbing revelation, we decided go straight to the doctors – my neurologist, chiropractor and OB/GYN – to get as much advice and knowledge as they could give us.
I learned from both my OB/GYN and my neurologist that I needed to continue taking my 4000 mcgs per day of folic acid throughout my entire pregnancy. The average woman has a .1% chance of having a child with spina bifida and should take 400 mcgs per day of folic acid.
I have a 1-2% chance. I was also on an anti-seizure medication at the time, (which my doctors agreed I should remain on throughout my pregnancy), and this increased my odds to around 4%. By staying on the high dosage of folic acid, I decreased the chances for disability back down to around 1%.
Our preconception consultation with my OB/GYN gave us much more information about what a pregnancy for me would entail. But first wanted us to visit a genetics counselor before I became pregnant. She’d question us regarding our family histories of sickness and disability, thus helping her form a good estimation of our chances of having a healthy child.
Luckily, when the time came to sit down with the counselor, she found no other family health concerns beyond the spina bifida for us to worry about passing along. And she agreed with my OB/GYN that taking my folic acid was the best fight against spina bifida for the baby.
My OB/GYN went on to tell us about the ultrasounds that would be necessary for proper monitoring of my baby’s health. Whereas a healthy woman has one or possibly two ultrasounds during her pregnancy, I was to have three, including a level II ultrasound that would closely examine the fetus for any signs of disability.
In actuality I had this performed at 16 weeks gestation. It was at this time that my husband and I witnessed the first sight of our little girl – with her beautiful, perfect spine and healthy body and mind. Phew! The best news we had ever heard – our daughter was healthy and developing nicely.
Had the Level II ultrasounds produced questionable results, we would have followed it up with an amniocentesis to find out once and for all the heath of our baby.
But because the ultrasound was so conclusive and showed so clearly her healthy spine and development, we were able to more or less relax for the remainder of my pregnancy and wait for our little girl’s arrival.
My biggest personal issue with my pregnancy was, quite frankly, bladder control. An annoyance for any woman during the later stages of pregnancy, for me it was a much bigger problem. I have weakened bladder control anyway, so having an ever-growing, moving fetus constantly pressing against my bladder was by far the worst part of my experience.
Starting as early as 2 or 3 months gestation the baby was already big enough to make me feel as if I had to go pretty much all the time. And certainly as she grew, so did my control troubles.
Without exaggeration, I would catheterize myself one minute, have absolutely nothing to eat or drink, and wind up having a huge accident only 10 or 15 minutes later! Suffice it to say, I kept the good people at Depends in business all by myself during this very frustrating and often embarrassing time.
There were only two more real issues with my pregnancy. The first was that I was basically banned from my local hospital (or, at least that’s what it felt like) at 31 weeks gestation. This was due to the anesthesiologist team’s admitted inexperience with delivering babies to spina bifida patients.
When my husband and I first met with these doctors, we intended to discuss a brief rundown of my case and to decide how I could be helped through the pain of delivery (I knew an epidural was out of the question because of the location of my spinal closure at the base of my spine).
However, we were instead strongly advised to deliver at a “teaching” hospital approximately 100 miles away. They could provide much better care, we were told, as well as a more thorough medical understanding of high risk deliveries to spina bifida patients.
Well, we were absolutely shocked and angered, to say the least. I was due in December and my husband and I did not want to have to drive almost 2 hours from home in potentially blizzard conditions to have our baby.
My OB/GYN and the practice’s entire team of gynecological doctors fought for me to be able to stay local for my delivery, as they all felt comfortable delivering my baby. But in the end, we decided it wasn’t worth fighting to deliver somewhere that plainly didn’t want me.
So we took the anesthesiologists’ “advice” and ended up delivering at a hospital better equipped to help disabled moms.
The second “bump” in my pregnancy journey happened at week 37. I went to visit my local OB/GYN for my regular check up. But instead of a quick and easy appointment, I was instead informed that I showed symptoms of preeclampsia and that I was to remain on bed rest until further testing was complete. I also found out that I was already dilated to two centimeters.
The following day, however, I had scheduled my first visit to the hospital at which I was going to deliver – an appointment meant to acquaint myself with the doctors and staff and to see exactly where I’d have my daughter.
Keep this appointment, my doctor advised, and she would talk to the doctors involved about my case and the recent developments in my pregnancy.
To make a long story short, I not only kept my appointment but was also admitted to stay at the hospital overnight for observation.
By the next morning I was told that today was the day – they were going to induce labor to keep myself and my baby out of harm’s way.
The preeclampsia was wreaking havoc on my body – failing liver function and rising blood pressure made it necessary to deliver my daughter now.
Labor itself was much better than I imagined it could be. I was able to have an epidural after all – it was just administered higher on my back than for a healthy woman. This helped with the pain immensely.
This, coupled with the fact that my spina bifida gave me a kind of built-in natural anesthetic effect anyway, really made the pain quite manageable. The worst the contractions felt, actually, was as if I were having extremely bad menstrual cramping – nothing more. Pretty cool.
In fact, I actually slept for a good deal of my labor. I was extremely tired as a side effect of the magnesium sulfate I.V. coursing through my veins.
Magnesium sulfate is given to preecclampsia patients to offset the chances of having a seizure during delivery. It just makes you feel really, completely exhausted.
My passive labor seemed to surprise everyone. At one point, after hours of irregular contractions, napping not much progress in dilating, the doctor decided to check my progress again.
She was surprised to find this time that I was completely dilated to 10 centimeters and the baby was right there, ready to make her big entrance into the world. Now I could start pushing. I literally gave 3 pushes and she was born – a process that took approximately 30 minutes.
She weighed only 5 1/2 lbs and was 19 inches long – but she was healthy and I was fine. Our daughter had finally joined us to make a family.
So – that’s my experience with pregnancy and childbirth. All in all it was a pretty smooth journey. I generally felt very healthy throughout the entire experience. I only gained a total of 27 lbs and was able to walk on my own until the very end, thanks to my regular weekly appointments with my chiropractor.
After delivery, my liver functions and blood pressure quickly returned to normal within a day or so. And neither myself nor my daughter has had any serious health problems ever since.
My husband and I were so thankful to have had such a smooth, healthy pregnancy, and so relieved and grateful to have our beautiful, completely healthy little girl. So happy to have our family at last.