One of the more well-known stigmas that surround those who have epilepsy is the idea that we cannot have children. This stigma, in particular, faces women with epilepsy who hope someday to have natural children. In fact when I was first told I had epilepsy over eight years ago I remember crying a lot. And it wasn't so much about the epilepsy as to the fact that I knew that having a family was going to be a little more complicated - if even possible. I remember thinking my then boyfriend (now husband) was going to leave me as this question of having a child was so very unknown.
In fact, even my gynecologist at the time confirmed my fears. When he asked me what type of oral contraceptives my husband and I planned on using when we got married, and I told him none, his response was incredibly insulting.
"What do you mean, you are thinking of having a baby? Don't you realize how dangerous that can be, and how completely selfish it would be for you to pursue a family? Not just for yourself, but , you could risk the life of your child and yourself. What would your husband think if something happened to you or your baby?"
Add to that my seizure and concussion of a year and a half ago and I thought for sure my chances of ever starting a family were shot. I knew that having seizures under control was of the utmost importance and here I had gone and had a seizure, and major brain damage. I could barely function myself - how would I ever be able to care for someone else? It was a moment when I had incredible doubts about myself - and my very identity as a woman. If I couldn't do the very thing that is so natural to a female, then what was I worth?
Now... I have a beautiful four month old daughter. What led us here? There are a number of considerations I had to manage before I thought about getting pregnant, during the pregnancy and birth, and also after the baby was born.
**Please note that the considerations below are those that I've personally experienced and are not to be used as medical advice. If you have epilepsy and are thinking of becoming, or are, pregnant, please consult with your OB-GYN and neurologist to determine a proper course of medical care.**
Pre-natal Care:
Ensure you have a good medical support team and plan for optimal health
Given the response from the gynecologist mentioned above, I knew I had to find a new OB-GYN, who would at least be willing to talk to me about the possibility of having a family someday. I wanted to find a neurologist also who would work with me to see whether or not having a family was really possible (and safe), and who would ensure that I was at my healthiest before I had a family. I was blessed to find the Tepeyac Family Center. They specialize in practicing the pro-life teachings of the Catholic Church, and are also trained in various methods of natural family planning. The benefit to this approach was that it helped my doctors to be able to see my cycles, and understand my reproductive health. As a result of their approach, they help a lot of women who have, like myself, various factors that could complicate a birth. They see having a baby as a natural part of life, not a condition to be managed. And all care is taken in the best view of the mother and the baby.
I was also lucky to have a neurologist at the George Washington Medical Faculty Associates who studies epileptic pregnant women. She and I agreed on a treatment plan well before I was pregnant to help me be as healthy as I could be. It involved regular check-ins with her, and constant monitoring of my medication levels.
Be on the right type and dosage of medication
As a note, it is important that if you are a woman of child-bearing years that you are on a medication that is healthy should you find yourself pregnant. There are a number of anti-seizure medications that can cause birth defects of babies in utero. There are also a number of newer medications that are seen to be more safe for women. Personally, I've been on Keppra XR for over eight years. The key with my doctor was to figure out how much I needed, while trying to be on as little as possible. As my neurologist stated, the risks to me of being off of my medication completely were greater than the risks to my baby if I were on the right amount of my medication.
Pregnancy Health
Have a treatment plan with your doctors
Once we found out I was expecting, it became very important that I stayed as healthy as possible. Both my OB-GYN and my neurologist were very frank in telling me that a seizure early on in pregnancy would very likely cause a miscarriage of my baby. Furthermore, a seizure later in life could be fatal for both me and the baby. So ... no pressure!! Seriously...
But what my doctors did help me to do was to make sure that I was taking care of myself. My neurologist had me get my medication levels routinely checked to make sure I had a therapeutic amount of Keppra in my system, especially as I gained weight and the baby grew. I also was encouraged to get as much sleep as possible (something I support all to-be parents to do).
Find support at work
I was also very lucky to have the support of my workplace. I was given all the time I needed to see my doctors - which included also a high-risk OB-GYN and epileptologist who gave second opinions on my course of action while I was pregnant. My work was also supportive on days where I just didn't feel very well, and encouraged me to take the time I needed to make sure I was healthy.
Honestly, throughout my pregnancy I felt like a human pincushion I was getting my blood drawn so often.
For pregnant mama's: make sure you are familiar with what protections are offered to you under the ADA. Work with your workplace to see what kind of time you can get for your appointments, and also if your employer could offer any type of telework opportunities to make it easier on your body.
Labor/DeliveryBe open to the advice of your doctors in the moment
Despite my hopes to have as natural a birth as possible, my doctors advised me otherwise. When I went in for my 39 week checkup, much to our surprise my OB-GYN told us they wanted to schedule an induction. Now to be honest, my gynecologist's office is one of those places that really tries to do things as naturally as possible, so they often don't schedule inductions unless they think it is medically necessary.
Also during delivery, they wanted me to be as stress-free as possible and to my doctors pain = lots of stress. As a result they encouraged me to have an epidural, which I did. The result was a very relaxed afternoon, sitting, reading and chatting with my husband. I was nervous, of course, but otherwise I felt I was in great hands.
Postpartum
Have help when you get home
Before my baby was born, my neurologist told me that I needed to have help at home for the first six weeks. She said that I needed to get as much sleep as possible (which for new parents is quite a laughable request). So we had both grandmas come for two weeks stints. They would take turns with me and my husband getting up in the middle of the night, rocking baby to sleep. That way, I only had to be awake for the feeding portion. Although I still was up often feeding the baby, I was able to get some rest and take care of myself.
My neurologist also kept me on higher medication levels post-partum to account for my sleep deprivation and irregular schedule. Once baby started sleeping through the night, we readjusted my medication levels down.
My husband was also an amazing help and source of support for me. From listening to my fears during the pregnancy, sitting and encouraging me in labor, and getting up for midnight feedings, helping make meals and more, he was awesome. Even in the months since our baby was born he helps me to make sure I am getting enough sleep, and overall maintaining a healthy lifestyle. He also has become quite adept at changing diapers in the dark!
Maintaining a positive outlook
Now that my daughter is here by no means do my fears go away. The weeks after my baby was born were some of the most difficult times. I was so sleep deprived and so terrified that as a result, I would seize and potentially hurt my baby. I am constantly in fear that one day I may have a seizure while holding her, while driving, or caring for her and in so doing could hurt her. And while those fears are still there, now that the baby is in a routine, I am learning a new normal - knowing that the rest of life with a child will be learning a lot about how to be flexible to a changing life. Understanding that approach gives me more comfort, and a great understanding of what I need to do to be there for my family.
I want to show my daughter that despite any limitations, life is beautiful and that it is worth every moment. And proving to the world that out of much darkness and confusion comes light and life and the best adventure of all.
NEXT UP: Tomorrow is a Bonus Blog Day. Be sure to check out both posts tomorrow at fairyfaye1986.weebly.com and livingwellwithepilepsy.com for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.
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