What my pregnancy journey looked like with PNH, Part 2

How my PNH diagnosis, treatment affected me as an expectant mother

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by Erin Fortin |

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Second in a series. Read part one.

Being pregnant was one of the most beautiful experiences of my life. The uncertainty of my health due to paroxysmal nocturnal hemoglobinuria (PNH) made the journey even more empowering.

Surprisingly, I didn’t feel much different while pregnant. I’d worried that my PNH symptoms would worsen, but they stayed about the same, except for an increase in fatigue. My sister was pregnant at the same time and wondered if I felt as uncomfortable as her because I wasn’t complaining. I think I was just accustomed to having strange symptoms due to my experience with PNH.

Blood thinner injections

Before I conceived, my hematologist told me I’d need to inject a blood thinner in my stomach every day during the pregnancy. I’d previously had needle phobia, so I appreciated knowing this in advance so I could mentally prepare as much as possible.

I decided to give myself the injections so I wouldn’t be dependent on my husband’s schedule. Nurses walked me through how to administer the shot, and I watched educational videos. But as I prepared to poke myself for the first time, anxiety crept in, and all the advice and research went out the window.

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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.

What do my PNH symptoms feel like?

The mental hurdle of giving myself an injection was tremendous, but it became easier the more I did it. I learned which spots on my stomach were more sensitive, the pattern of switching between the left and right sides of my bellybutton, and that pushing the medicine in as slowly as possible helped with the pain.

I started with Lovenox (enoxaparin sodium) injections once a day. I’d put lidocaine numbing cream on my stomach in hopes of minimizing the pain, but the sensation of the injection was very difficult to get used to. I had significant bruising at times, and it became harder to inject as my stomach grew bigger and bigger.

For the last few weeks of my pregnancy, I switched to heparin injections twice a day because my doctors wanted me to use a shorter-lasting blood thinner closer to labor. These injections were similar in administration and pain level, but it was an adjustment doing them twice a day.

PNH treatment

Going into the pregnancy, my doctor expected to keep my Soliris (eculizumab) treatment schedule the same (every 14 days) until my third trimester. However, during my second trimester, I got sick, which triggered a rapid decline in my platelet count. We changed my treatment schedule earlier than planned to every 10 days.

Fortunately, even though I’d expected to receive multiple blood transfusions during pregnancy after talking with another PNH patient about her experience, this ended up being unnecessary for me. My hemoglobin started at over 10 grams per deciliter (normal levels for women are 12-16 g/dL). Although it got as low as 8 g/dL, this wasn’t transfusion-worthy.

Vaginal or cesarean

Deciding between a vaginal birth or a cesarean section involved a lot of pressure. My husband, John, and I discussed the pros and cons with my hematologist, high-risk OB-GYN, and labor anesthesiologist for the last few months of the pregnancy. My decision changed multiple times, as I wasn’t sure what the best option would be.

At first, I felt a C-section would be the safest option for me, as it was predictable and there was less chance of things going wrong. Doctors could estimate how much blood I’d lose during surgery, plan the date around my PNH treatment schedule, and have a good idea of what was going to happen.

But connecting with other patients who’d been through both types of births changed my mind. Some mentioned that healing from a major surgery could be very difficult with PNH and possibly trigger hemolytic episodes. After giving it more thought, I made my final decision to try a vaginal birth and scheduled my induction.

A week before my induction, my platelet count dropped drastically, and I was very close to being unable to receive an epidural for pain management during labor. Out of fear of my platelets dropping even more, my doctor moved up my induction and said it was time to have a baby!

Next week, I’ll discuss the delivery of our beautiful daughter, Joelle.

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.