8 things you should know if you have Spina Bifida and are planning to get pregnant!

We are about a week away from my induction date and I wanted a place to write down all the things I have experienced through this amazing journey! I remember when my husband and I first started thinking about having children and feeling like there isn’t much info out there about women who have Spina Bifida and their pregnancy journeys. So, here is mine!

1.Do your research.

I know I probably don’t have to even tell you this. But, I have always struggled with finding well-educated Spina Bifida doctors and the thought of trusting a doctor to guide me on such a nerve-racking journey was scary. I also do not live in a state that has an adult Spina Bifida clinic, so we felt like we were on our own to find the best team of doctors to guide us. We got very lucky and a couple of doctors were recommended who have been fabulous and have gotten us to the finish line. I am seeing a doctor that specializes in Maternal Fetal Medicine and high risk pregnancies. The best way to describe her is like an OBGYN on steroids. High risk doctors are even more educated in the field of complicated pregnancies and are more equipped for these sort of unique circumstances. So, do your research, ask around, and don’t settle until you are happy with who is going to care for you and your little bundle of joy!

2. Prepare emotionally, too!

If you’re anything like me – always searching for ways to be in control of what is happening – you might want to get right with the idea that you are going to be totally out of control of what happens for the next 9 months. Your body is going to go through some weird changes, everyday will bring something new, and that “plan” you have is going to go right out the window. When we started trying to get pregnant we thought it would be so easy but…it took a year. I also really wanted to have a C-section and come to find out, that is most likely not possible. Not to mention I have had a few hospital stays that obviously I wasn’t happy about. So, I would highly recommend finding an outlet that will help you embrace the positive in your pregnancy and embrace these uncontrollable things. For me this was seeking out a therapist who has been my light.

3. “Normal” pregnant women are more prone to infections so, guess what….

Having Spina Bifida and being pregnant may bring on bladder/kidney infections (it certainly did for me). Because your baby is going to take up some room in there and given your unique make-up, you may suffer from many infections during your pregnancy. I have an augmented bladder and reflux in both my kidneys on a normal day so, you can only imagine what adding a growing human being in there will do to that already screwed up area! Don’t worry though; if you listen to your body and catch these infections early they won’t hurt the baby or mommy. You are more limited in what you can take for antibiotics while pregnant so be sure to consult with infectious diseases and your doctor to see what is best.

Oh, and I almost forgot to mention… get ready to pee your pants! Your urinary incontinence is only going to get worse as your growing fetus gets larger. It’s not fun but I’ve been told that once the baby is born everything will go back to the way it was.

4. You will be considered “high risk”.

As I mentioned before, I am seeing a high risk specialist; not your regular OBGYN. This was recommended by my regular OBGYN. They explained an OBGYN goes to school to learn how to care for and deliver your “normal” pregnancies and high risk doctors are more educated to specialize in helping pregnant women who have unique situations such as Spina Bifida, like me! Basically, Maternal Fetal Medicine doctors like the one I am seeing subspecialize within the field of obstetrics to care for high risk pregnancies.

Things you can expect to experience when being considered “high risk”:

  • Getting ultrasounds more often than normal (best part)
  • Having appointments with your doctor every 3 weeks and as you approach your due date those visits will become even more frequent (every 2 weeks and eventually once a week)
  • You may be asked if you’d like to have additional genetic testing done. We decided this wasn’t for us. But, it is something that can determine birth defects early on and possibly help your doctors prepare better for your child/pregnancy.

5. C-section or natural?

When I first found out I was pregnant I wondered if I would be able to deliver the baby naturally. If you have Spina Bifida you know that your muscles “down there” aren’t as strong as most women. So, I thought for sure they would have me plan a C-section. Come to find out, the general rule of thumb seems to be that if you can push to have a bowel movement, you can deliver a baby!


6. Can you have an epidural?

I’m sure a lot of you with Spina Bifida have had tethered spinal cord surgery like I have. This means that your spinal cord might end in a different area then most people depending on how stretched it got before it was untethered. You will most likely need to have an MRI on your lower back (if you haven’t already) to determine if an epidural is even an option for you. If it isn’t, there are other option for pain relief during labor such as IV medications or some of that laughing gas they gave you as a kid at the dentist!

7. Make sure you have an amazing support system.

I have had such a great support system along the way of family, friends and doctors. Even though I sometimes lose my way and my mind goes a little crazy with the what ifs, I always have these people to bring me back and lift me up. My husband has been the biggest support. We made sure that from day one we were on the same page about having children and starting this journey together. I can’t say enough about how encouraging he has been in reminding me that even though I have Spina Bifida, my body is doing exactly what it is supposed to do and that although this pregnancy isn’t text book perfect, it is perfect for us! I often pinch myself wondering how I got so lucky!

8. Enjoy it!

Don’t forget that all that you may go through and all that you experience is for this little miracle that you will be holding in no time. Every doctor’s appointment, every medical bill, every infection is totally worth the end result! So, do yourself a favor and remember to embrace every second of it. It will go by fast and will be the most amazing thing you have ever done!

We are ready to welcome our little lady in just about 10 days! We are being induced on 4/17/19 and couldn’t be more excited!

Louise Victoria Marquis, you are so loved, so strong, and our greatest journey yet!

All of these amazing pictures were taken by the very talented Melissa Koren

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Kristin Marquis

Hey there! I'm Kristin. I live in the beautiful Seacoast town of Portsmouth, NH with my hubby Matt and our rescue pup Charlie. I was born with Spina Bifida and made this website in hopes that I would reach other people going through the same difficult things as I have and also to inspire others to embrace their differences and live Spina-Beautifully!