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One Patient's Story: Marfan Syndrome and Pregnancy

Feb 15, 2017

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.

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700 Children’s® features the most current pediatric health care information and research from our pediatric experts – physicians and specialists who have seen it all. Many of them are parents and bring a special understanding to what our patients and families experience. If you have a child – or care for a child – 700 Children’s was created especially for you.