Living with Epilepsy and Navigating Motherhood, with Kristin Baker

Kristin Baker and her daughter

Epilepsy is a complex and often misunderstood condition, and for many patients, the journey to diagnosis and proper treatment can be filled with obstacles. Kristin Baker’s story is one of perseverance, self-advocacy and the importance of finding the right medical team. From experiencing her first seizure while snowboarding to undergoing life-changing brain surgery, Kristin shares her challenges, triumphs and what she wishes she had known earlier — especially as she navigated pregnancy and motherhood with epilepsy.

Can you share a bit about your epilepsy journey — when were you diagnosed, and how has it impacted your life?

Kristin Baker: I had my first and only grand mal seizure when I was 26 years old when I was snowboarding in Vermont, and I fell and hit my head (needless to say I wear a helmet now). Later that night, I had my first seizure and went to the local emergency department. Looking back, I had an intense aura that came right before I fell to the ground and started seizing and a warm feeling in my chest that felt like my heart was going to burst. From what my family told me, I became very ridged and tense. I was unable to control my facial expression. I then fell to the ground, urinated, started to seize and stopped breathing.

When I came home to Long Island, I went to the hospital for follow-ups with multiple doctors. Almost weekly I was experiencing this intense feeling of déjà vu. I would feel the warmth in my chest and I would have an image in my head of a girl in an enclosed area, which I can only describe as a submarine. My face looked like I was petrified and all I could say was “It’s happening. It’s happening.” It lasted in total about 45 seconds.

Over the course of six years, I had so many different scans and tests. My doctor ordered one 24-hour electroencephalogram (EEG) and kept me on my medication. Since I did not have any seizure-like activity during that period, my doctor told me I was making my seizures up. I wasn’t sure what to do at this point.

A friend told me about Dr. Lara Marcuse and how she diagnosed a neurological issue she had. I scheduled an appointment with her right away. When I saw her, I explained all of my symptoms and what my family told me happened the night I had my grand mal seizure. She told me everything I was feeling were all symptoms of partial seizures and that she believed I did have epilepsy.

She ordered more in-depth tests and scans. I did a much longer monitored EEG without being on medication and I had nine seizures in a row in my sleep and I didn’t even flinch. She told me that I in fact did have epilepsy and without treatment I could have severe brain damage. We immediately set up a plan, and I went through different procedures and tests to see exactly where these seizures were coming from. Her team found the area: my right temporal lobe. Within a few months, I was ready for surgery with Dr. Saadi Ghatan. A month after that I had an intense partial seizure that lasted much longer than the rest. I went back to her office and they scheduled a partial right temporal lobectomy within a few weeks.

What were some of the biggest challenges you faced in managing epilepsy?

KB: For me, getting a diagnosis was by far the most challenging part. The fact that there are doctors out there who think patients are faking seizures is beyond anything I was expecting. It is still unbelievable that for six years I wasted my time at other hospitals trying to find out what was wrong with me when Dr. Marcuse was able to tell me in one visit that she believed me.

Prior to my surgeries I was not able to drive for months at a time. I was 30 years old and my mom had to drive me to friends’ houses, work, school, the mall, etc. It was such an inconvenience to her, although she will never say that it was or let me feel bad about asking for her help.

Having epilepsy while in nursing school was extremely difficult because I needed to go to so many appointments and have so many different tests and scans. It was hard to manage time for both.

Since I was having so many seizures in my sleep, I was almost always exhausted. I needed to take naps throughout the day and never understood why I was so tired.

When you decided to become pregnant, what concerns did you have about managing epilepsy during pregnancy?

KB: My main concern was if my medication was safe to take while pregnant. Prior to trying to get pregnant, I met with a high-risk maternal fetal doctor. We went over my medication and what I was able to take. I also suffer from severe migraines, so that was another thing I needed to address.

Another concern was what could happen to my daughter if I had a seizure while being pregnant. I was petrified that I could unintentionally hurt her and there was nothing I could do to stop it or prepare for it.

How did you and your health care team prepare for a safe pregnancy while managing epilepsy?

KB: Lamictal (lamotrigine) is safe to take during pregnancy; however, you need to get your levels checked monthly as they can change drastically and need to be monitored closely. Dr. Marcuse made changes to my dosage as needed. There was one month where I waited just a little too long to get my blood level checked and I ended up having a partial seizure while at work. I immediately got my level checked and it was very low. My Lamictal dose was increased and it didn’t happen again.

What has been your experience balancing motherhood and epilepsy management?

KB: I just had my Lamictal level checked and my dose was increased. I have been having a small version of my aura at times. Dr. Marcuse is aware, and she is monitoring it very closely. I know that all I have to do is reach out to her and she will help me through what needs to be done.

One very difficult aspect of motherhood for me is that stress and lack of sleep are a trigger for my seizures. My advice to other mothers with epilepsy is to rest whenever you can. It’s much easier said than done, but take a nap when your baby naps and utilize your support systems. In my case, I brought my daughter to either my mom’s or sister’s house so they could watch her an hour or so while I took a nap.

I am thrilled to say that epilepsy has not stopped me from being the mother I want to be.

What kind of support system has been most helpful for you — family, doctors or patient communities?

KB: My mother has been my biggest support system. She has gone above and beyond helping me over the last 11 years. Not only did she drive me all over New York when I wasn’t able to, she barely left my bedside while I was hospitalized multiple times. She would sleep in my hospital room at night, wake up at 4:30 in the morning, go home, get ready and go to work. After working a full day as an elementary school teacher, she would then go home, regroup and drive straight back to the city (an almost two-hour drive) to do it all over.

Additionally, I would not be who I am today without Dr. Marcuse. She singlehandedly saved my life. She believed me when I spoke to her about my symptoms and did not give up until she could help me.

If you could go back and tell yourself one thing before starting this journey, what would it be?

KB: Epilepsy is in no way a diagnosis that can stop you from getting pregnant. It is scary to think about taking care of someone when you don’t think you can take care of yourself. No seizure can be predicted, and that is so frightening. Knowing your warning signs is vital, as it can save you from a fall which could cause harm to your unborn child. But getting pregnant, having children and having a normal life is completely possible. As long as you have a plan with your doctors and a good support system, it can be a completely stress-free experience. You are capable of having a healthy child and a safe pregnancy.