Guest blogger and NMO Support Group leader, Erin Miller, writes about the first-ever NMO Pregnancy Support Group teleconference she hosted in June.
I started this support group to help other women living with neuromyelitis optica (NMO), and to let them know it doesn’t have to stand in their way of fulfilling their dreams of becoming mothers. I’m a woman who received a diagnosis of NMO, who then had two beautiful children after receiving my diagnosis. As a mother who has experienced (and is still experiencing) the ups and downs of both, NMO and motherhood, helping others by sharing my experience is something I am compelled to do. If I am able to help one other NMO mom-to-be, I will be thankful for that opportunity. This first-ever NMO Pregnancy Support Group conference call recap summarizes what we talked about.
Important Themes
During our first call we discussed three themes:
- NMO doctors’ opinions about becoming pregnant with NMO;
- Protocols during pregnancy;
- Breastfeeding and maintenance medication.
NMO Pregnancy Support Group Topics
Each subject has many questions. Some patients have a hard time speaking to their doctors about what they would like to do, or asking doctors what would be best for them. Every NMO patient is different and our doctors have tailored our medications to our bodies’ NMO history.
These important topics can be very confusing for patients.
The first theme discussed the question of why so many NMO doctors appear to be on different pages regarding pregnancy. Is it because every patient is different? One reason could be because we are all on different medications and our attacks are different from each other. For example, it’s difficult to compare how often attacks occur, or what happened to someone during an attack or how long a person has been stable. All of these things are big puzzle pieces for us as patients. Doctors work to help each of us solve our own puzzles. Those who want to conceive need to work with their doctors before, during and after the process, all of which are more pieces to the puzzle of living life with NMO.
The second topic discussed what the protocol would be when someone actually becomes pregnant. Again every patient is different and their doctor can guide them on the path that will be the best for that person. It is very important to find the right OB/GYN who will work with neurologists and any other doctors. They all have to work together as a team.
The third discussed a more specific question, which was whether to either breastfeed or start taking a maintenance drug right after the birth. This is a very good question and it depends on the patient’s history with NMO and what the doctors say. Remember, each person is unique with their NMO diagnosis. No two are alike. Patients need to talk with their neurologists in order to come up with a plan. There isn’t a “one-size-fits-all” answer.
Conclusion of the first-ever NMO Pregnancy Support Group conference call
The call lasted about an hour and it was the first chance people were able to speak about this with other NMO patients. I am so happy we started these teleconferences and a support group for NMO pregnancy. This helps us as patients support each other while sharing our story about what we did to have a baby as we live with NMO, and what the outcome was.
We look forward to more calls in the future. Please visit The Guthy-Jackson Charitable Foundation’s support group page for our next teleconference date.
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Erin Miller is a mother, wife, NMO Advocate, and co-founder of NMO Diaries. The opinions expressed in this blog post are for entertainment purposes only and are not to be taken as clinical reference or advice. Please read our terms and disclaimers.