When a Mother in a Rare Disease Facebook Group Gave Me Hope to Have Children

I always wanted to be a mother.

My disorder has always played a huge role in anything I have wanted to accomplish. Pregnancy would prove just how big of a role Marfan syndrome actually has over me.

 Could I carry a baby full term?

Would I be able to deliver a baby without risking my own life?

These questions would be answered — twice!

My husband was enlisted in the U.S. Navy. We were at his first duty station in Pensacola, Fl. I soon began vetting OB/GYNs and a cardiologist at the naval hospital. I knew, and have always known I should not get pregnant “up out of nowhere.” It would have to be meticulously planned.

The OB at the naval hospital was not on board with my plan to have a bundle of joy. I had the feeling he was pretty sure I would die and never make it out of delivery.

That did not stop me.

Next was to see if I could sweet-talk the cardiologist into sending me to a bigger hospital more  equipped for high-risk pregnancies. She sent me to an Air Force base in Biloxi, Mississippi. I got the same “talk” as I did before. I had a low chance of survival and it wouldn’t be worth my life.

I was devastated, but still kept pushing.

While I researched vigorously, I stumbled upon a Marfan support group on Facebook. I met a woman who had children! That’s when things fell into place.

I went back to my cardiologist and gave her the names of a team of doctors that would be able to help. The problem? These doctors where in our home state of Ohio. I would have to leave my husband and move back to Ohio for the pregnancy.

I remember walking out of my cardiologist’s office and her specially telling me not to get pregnant until she talked with this group of doctors.

Little did she or I know, I was already pregnant.

Once I confirmed the pregnancy two weeks later it was a total whirlwind. I packed my belongings and my husband drove me to Ohio. We were so excited!

Eight weeks into my pregnancy I was started on Lovenox, an injectable blood thinner. I am on Coumadin which can cause birth defects. However, Lovenox is not approved for my type of mechanical heart valve and can cause blood clots. I had a choice and I went with the safer choice for the baby. 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 a whole other beast to contend with. I went to the hospital three days prior of my scheduled C-section. By this time, I was able to go back on oral blood thinners, but being placed on a Heparin drip so my blood would clot faster after delivery.

The day finally came! We would meet our beautiful baby boy. I was put completely under for the C-section. Since I have rods fused to my spine for scoliosis and scar tissue, I was unable to receive an epidural.

I woke up in my room which was located on the cardiac wing. My cardiologist won that battle and wanted me to be somewhere they could properly monitor my heart. I waited for what seemed like hours for them to bring my son all the way 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 in bed. I blacked out. Apparently my heart rate was dropping fast. I do not have much memory from that point on.

I remember waking up a few days later with a tube down my throat and the nurse telling me I gave them a scare and how she was thrilled to see me awake.

The C-section had caused internal bleeding. The doctors started my blood thinner too soon after the procedure and I lost a significant amount of blood.

I didn’t get out of the hospital for two weeks.  I had a tube down my throat for a week. I barely bonded with my new born. I had two surgeries in three days, I have the 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.

The second baby was a huge surprise — a smooth delivery, but a bumpy pregnancy. A week before he was born I had a stress fracture. I had to have physical therapy most of the pregnancy on my back. He was also a preemie; he came five weeks early due to low amniotic fluid. He is an amazingly ornery almost 2-year-old now.

If you are thinking of getting pregnant and have Marfan syndrome, always talk to your doctor first. Get a plan in place. I was lucky to find someone in my shoes to point me in the right direction. Hopefully this blog post can be your place to start. Each person affected with Marfan’s is affected differently.

Always consult your doctor and be prepared.