The Possibility of Neonatal Myasthenia Gravis After Delivery

I had my third baby over a year ago. I didn’t have myasthenia gravis (MG) during my first pregnancy, but I did have symptoms during my second pregnancy although I was undiagnosed until about 2 years postpartum. This was the first birth where I knew my diagnosis going into delivery.

I wasn't prepared...

It was also the first delivery with the possibility of my baby having neonatal myasthenia gravis. I knew going into it I was more prepared since I’d had MG for 10 years prior. That being said, I wasn’t prepared for the lack of research and knowledge doctors would have surrounding neonatal MG. Granted, it is extremely rare and there isn’t a ton of research. I learned during this delivery that not only did I have to advocate for myself, I now also had to advocate for my new baby.

Leading up to the pregnancy, I was pretty well-controlled. Despite that, I did see a high-risk OB/GYN and a neurologist who monitored my care closely. Both doctors had experience with MG in pregnancy, although both of their experiences were slightly limited. Due to the lack of experience, they also had slightly conflicting opinions on how to handle postpartum care in the hospital.

Differing opinions and advice

My high-risk OB/GYN was leaning on the advice of neonatal doctors at the hospital. Their recommendation was to observe the baby after delivery for 3 to 5 days. My neurologist had suggested that they observe the baby for 2 to 3 days. All of my own research, including the pamphlet my neurologist gave me, showed that there were no cases of symptoms presenting with neonatal myasthenia gravis after the initial 3 days post delivery.

The rest of the research that had been done, as told my neurologist and OBGYN, showed that the majority of babies presented with neonatal Myasthenia Gravis in the first 24 hours after delivery. I had expressed my own preference and opinions based on this information and they agreed that the baby should be observed for 3 days.

Going into delivery, I didn’t know if the baby would be observed in the nursery or in the NICU though. I had asked my high-risk OBGYN if I could speak with neonatal prior to delivery to see if the baby could be observed bedside and that if he did present with any symptoms, could then be taken to the nursery or the NICU. She had told me that she would arrange for me to speak with someone prior to the delivery.

Delivery and my anxiety

On the day of delivery I wasn’t able to speak with anyone so my anxiety was through the roof. For my first 2 deliveries I wasn’t separated from my babies and the thought of being separated from this baby gave me anxiety and a lot of fear of not being with him. I also know from experience that most doctors aren’t knowledgeable about myasthenia gravis and since neonatal MG is even more rare, I was fearful that they wouldn’t know the signs or how to manage his care.

I was told shortly before delivery that they would take the baby 20 minutes after delivery to the nursery and that he would remain there for 3 to 5 days. I was set to leave the hospital after day 3 so the idea of not only being separated from my baby in the hospital but being separated from him outside of the hospital provided more anxiety. This anxiety and stress of course caused me to flare during my postpartum period there as well.

I had decided that I would speak to the pediatrician the first morning after delivery to discuss the information I was given about neonatal MG and to get their opinion on whether or not it would be 3, 4, or 5 days in the nursery.

The first pediatrician I spoke with on day one had said the notes read from neonatal that they wanted to observe him for 5 days. On day 2 of postpartum, I spoke with another pediatrician who was making their rounds that day. She had said the notes read 3 to 4 days. After speaking with my high-risk OB/GYN and my neurologist, I was comfortable with him staying for 4 days out of an abundance of caution but I didn’t feel 5 days were warranted. She agreed and we compromised on 4 days.

I wish I had been better prepared

It wasn’t at all the experience I was hoping for, being separated from my baby for that long. Not being able to sleep next up him or be there when he needed me those first few days was so difficult. I wish that my team had prepared me better because I felt completely blindsided, frustrated, and confusion when no one could agree on what to do.

I’ve spoken to other moms since and their experience varies from the baby being able to be bedside and closely monitored for a day and the extreme that I experienced of 4 days in the NICU.

I appreciate the abundance of caution, however I feel like the postpartum period for mom and baby is especially important and the risk of separating a baby and a mom should outweigh the benefit. I don’t know in my case that 4 days of that was justified, however I’m happy that my baby did not have symptoms of neonatal MG and is now safe at home thriving with me.