What it was like delivering a baby as someone with PNH, Part 3

How my rare disease affected my labor and delivery experience

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by Erin Fortin |

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Third in a series. Read parts one and two.

On May 8, 2022 — Mother’s Day — I arrived at the hospital for labor induction. At that point, my platelet count was declining rapidly due to my paroxysmal nocturnal hemoglobinuria (PNH), almost to a point where I wouldn’t be able to receive an epidural for pain management. My husband and mother were with me, and we were all equally nervous and excited. It was finally time to have my baby girl!

After getting settled in at the hospital, staff took bloodwork before giving me any medication. It took hours for my results to come back, as the technicians were counting my platelets by hand to be extra cautious and accurate. Luckily, the results indicated I could safely receive an epidural.

The process worked out in my favor: Though I felt pressure, I never felt any pain from contractions. My labor progressed quickly after doctors administered Pitocin (oxytocin), a hormone used to induce labor, and overall, I felt OK throughout the process. After 11 hours of labor, it was time to push.

Going into the delivery, one of my fears was not having enough energy to push out a baby due to my fatigue from PNH. Thankfully, my daughter was born after 15 minutes of pushing. But during that time, I struggled to catch my breath and felt like I couldn’t breathe. Looking back, I wish I had asked for an oxygen mask. That might’ve helped.

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A graphic illustrating a woman rolling a stone up a mountain on the left side, then celebrating it reaching the top on the right side.

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How I advocated for myself after giving birth

After the delivery, it was an interesting experience not being the center of medical attention. In the labor and delivery department, I had high-risk OB-GYNs who were aware of my diagnosis, but once I was moved to a postpartum unit, nurses were unfamiliar with my health situation.

I was looked after and monitored for hemorrhaging, but the nurses were rightfully focused on the baby. Still, I was scared not knowing how my body would react to a highly stressful event. I used this as an opportunity to put my self-advocacy to the test.

A few hours after giving birth, I started to feel dizzy, lightheaded, and generally unwell. I asked my nurse if she could order a complete blood count so I could check my hemoglobin. She told me she wasn’t authorized to place the order, and unfortunately, the doctors on call weren’t available.

I understood the situation, so I waited. But after an hour, I again voiced how serious my condition was. The nurse was very kind and sympathetic, but there was nothing she could do. After waiting and resting some more, I began to feel better, but I didn’t end up getting bloodwork done until a few hours later.

If I were to have another baby in the future, I’ve learned to make sure a doctor places an order for postpartum bloodwork before I leave the labor and delivery unit. Hospital staff explained to me that I wouldn’t need to fulfill the order, but it would be there for me if I needed it.

Another moment I spoke up for myself was when I asked for compression socks. I was concerned that sitting in a hospital bed for a few days would increase my risk of a blood clot. Because my nurses weren’t familiar with PNH, they said it wasn’t necessary to use compression socks. My instinct as a people pleaser was to say, “Oh, OK, no problem,” but I knew wearing them would give me peace of mind. After I asked a second time, the nurses gladly got me some socks.

Meeting my daughter, Joelle, was one of the happiest experiences of my life. I was so grateful, and still am, that PNH didn’t hold me back from becoming a mom. Delivering a baby while managing the condition was intimidating, but I feel so empowered that I was able to do it successfully.

Next week, I’ll discuss parenting a newborn while dealing with PNH symptoms, as well as my two hospital stays — one from postpartum preeclampsia and the other from mastitis.

Note: PNH 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 PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.