Deciding If Pregnancy Is Safe as a Woman With Neuromyelitis Optica

I had been misdiagnosed with multiple sclerosis (MS) when I got married. My husband and I talked about having children, and my doctor at the time told me that pregnancy would not affect my disease. So, we looked into in vitro fertilization (IVF).

Although I was told that pregnancy would not carry any risk for me, I was a little nervous. I was not 100% into the idea because I feared having a relapse after giving birth. A lot of people with different medical conditions have babies all the time. I think they are very brave. Maybe I am not as brave as them.

I thought about how difficult it was for my husband and me when I had relapses that left me paralyzed from my neck down. I had been treated with an MS medication that made my actual condition, neuromyelitis optica (NMO), worse.

We lived in Florida at the time and did not have any family that could help us. My husband would come home from work, help me take a bath, and prepare meals for us both. He was exhausted. I tried to imagine taking care of a newborn baby on top of that. We did not have the support that we would have needed. 

Bringing a child into this world is a big responsibility. You not only have to care for their physical needs, but also nurture them.

In Florida, I worked for almost five years with a community-based organization that helped children who had been removed from their homes by the Florida Department of Children and Families. I frequently saw a lot of physically healthy people who were unable to care for their kids. As soon as stress increased during the holidays and parents spent more time with their children, the agency overflowed with neglected and abused kids.

It was not my job to judge the parents. However, I would not want to treat my child that way. I would be neglecting my child involuntarily if I couldn’t take care of them because of my health. I would need someone to help take care of both my child and me.

Shortly after I was married, I had a relapse, and then I had another relapse the following year. This last relapse was when doctors discovered that I have NMO, not MS. I was happy that I did not follow through with the IVF treatment.

According to authors of a study published in the EPMA Journal, “Pregnancy carries the risk of relapse and subsequent disability for women with NMOSD [neuromyelitis optica spectrum disorder], including possible triggering of relapses by the pregnancy, increased relapse frequency postpartum, and higher degree of disability after pregnancy.” 

Another study published in the Journal of Neurology, Neurosurgery and Psychiatry found that women with NMOSD are at a high risk of relapsing during the first trimester after giving birth or ending a pregnancy. Women like me with more aquaporin-4 antibodies are also at a higher risk.

I will never forget meeting a 20-something-year-old woman in a Miami infusion center. She told me that after having a baby, she could not walk without the help of a walker. Her mother and her husband had to do almost everything for her and the baby.

I thought she was very brave. The idea of being in her shoes terrified me. Having a baby would be a gamble for me: I could end up more disabled or not.

I have not had an attack since 2012. I try to manage my NMO symptoms before they become more severe. One of the main symptoms that NMO patients suffer from is fatigue. To avoid it, I usually stop any activity when I grow tired. I do not think I would have this flexibility with a baby. 

Right now, I am grateful that I can drive, work part-time, and do all my grocery shopping and house chores. When I have an attack, it is full-blown. My past attacks have been like hurricanes that destroy everything in their path. They have left me paralyzed twice — once from my neck down. I do not want to risk that happening again.

Meanwhile, I admire the courage of all the women who choose to risk a relapse for the joy of motherhood.

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Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.