One Patient’s Story: Marfan Syndrome and Pregnancy

I have Marfan syndrome. It’s a connective tissue disorder that affects my whole body, including my heart. My Marfan syndrome has always played a huge role in my life. Pregnancy proved that.

Could I carry a baby full term? Would I be able to deliver a baby without risking my own life?

In 2009, my husband was enlisted in the U.S. Navy. I began vetting OB/GYNs and a cardiologist at the naval hospital in Pensacola, FL. Because of my disorder, I knew I should not get pregnant “out of nowhere.” It would have to be meticulously planned.

The OB at the naval hospital was not on board with my idea to have a baby. I had the feeling he thought I would die and never make it out of delivery. That didn’t stop me.

I tried to talk my cardiologist into sending me to a hospital equipped for high-risk pregnancies. She did, and I got the same “talk” as before. I had a low chance of survival and it wouldn’t be worth my life. While I continued to research, I stumbled upon a Marfan support group on Facebook. I found a woman who had children!

I went back to my cardiologist and told her about a team of doctors who could help. The only problem? These doctors were in Ohio. I would have to leave my husband and move there for the pregnancy. I packed as soon as I could.

The doctors made adjustments to my medications, I had heart monitors, many trips to Nationwide Children’s Hospital to see my cardiologist, and many trips to Ohio State Medical Center to see my OB. It was a pretty smooth nine months. The delivery was something entirely different.

I went to the hospital three days before my scheduled C-section and was placed on a Heparin drip. The day finally came that we would meet our beautiful baby boy. Because I have rods fused to my spine for scoliosis, I was unable to receive an epidural and was put under general anesthesia. I woke up, after surgery, in my room on the cardiac floor where they could monitor my heart. I waited for, what seemed like, hours for them to bring my son from the nursery. I finally was able to look into his face and hold him for a few short minutes.

Then a team of nurses swept in, taking the baby and laying me down. I blacked out because my heart rate dropped quickly. I do not have much memory from that point on. I woke up a few days later with a tube down my throat and the nurse telling me I gave them a scare. The C-section caused internal bleeding and my blood thinner caused me to lose a significant amount of blood.

I had a tube down my throat for a week and spent two weeks in the hospital. I barely bonded with my newborn. I had two surgeries in three days and I have scars in the shape of an anchor to prove it.

I have barely any memory of my son’s first moments of life, but I did it!

I fought for him before I had him and immediately after. I fought for my life in those two dark weeks. He is now 5 years-old and one of my greatest blessings.

My second baby was a surprise with a smooth delivery, but a bumpy pregnancy. I had to have physical therapy on my back for most of the pregnancy, a week before he was born I had a stress fracture and he was a preemie; born five weeks early due to low amniotic fluid. He is almost 2 years-old and is amazingly ornery.

If you are thinking of getting pregnant and have Marfan syndrome, talk to your doctor first. Get a plan in place. I was lucky to find someone to point me in the right direction and hopefully this blog post can be your place to start.

To learn more about Nationwide Children’s Hospital’s Adolescent and Adult Congenital Heart Disease Program, click here.

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