When diagnosed with Friedreich’s ataxia (FA) at the age of 25, I was devastated. I thought I would have really poor quality of life and that all of the plans I had for my future would be impossible. One of the biggest emotional topics was parenthood. I thought that having children was out of the question. After meeting with several FA specialists and learning more about my specific diagnosis, I was told, “If you wanted to have a family before you were diagnosed with FA, you can still have a family. Don’t let FA stop you.”
My husband, Kyle, and I wanted more information about what having kids could look like before we made a decision either way. Friedreich’s Ataxia Research Alliance (FARA) provided us with information about a study done with pregnancy in FA patients. That study can be found here. The study basically states that women with FA had successful pregnancies that aren’t really that different from non-FA patients.
We decided to get Kyle tested to see if he was a carrier for FA. To have FA, you have to inherit the FA gene from both parents. We already knew that I would pass on the FA genes since that is all I have to offer, as an FA patient. But if Kyle is not a carrier, there was no risk that our children would have FA — they would just be carriers. However, if Kyle were a carrier, our children would have a 50 percent chance of having FA. A blood test is required to check if you are a carrier or not. Long story short: Kyle is not a carrier, so we decided to go ahead and start a family.
We got pregnant with our son in March 2014. I was the first pregnant FA patient that my OB-GYN had ever seen, so she referred me to a specialist just to make sure everything was OK. The specialist did a few additional tests and the baby and I got the all clear! Our baby was happy and healthy. The specialist “signed off” on me and I proceeded through my pregnancy with my OB-GYN.
During pregnancy, falling was my biggest fear. Poor balance and coordination is my main FA symptom, and I had no idea how pregnancy would affect that. Luckily, pregnancy didn’t seem to accelerate or magnify my symptoms, and I always took extra precautions. I was able to walk independently, ride my trike, and swim all through my pregnancy to keep my heart healthy.
My pregnancies were fairly normal and uneventful. Both of my babies progressed as they should and I felt pretty great. Well, I had the typical morning sickness, aches, and pains, but it was all very expected and tolerable. I was induced into labor and the process was very smooth. My son, Brooks, was born in October 2014. He weighed 8 lb., 2 oz. and was 21 inches long. He was (and still is) perfect.
Being a mom is the greatest thing I have ever done. It is so nice to focus my love and attention on this tiny miracle. I am so thankful for the perspective Brooks provided to my life. It was refreshing to be thankful for my sweet miracle instead of bitter and angry about FA. The disease has definitely made my life more complicated and difficult, but I wouldn’t trade a minute of it because it brought me to where I am now. Having FA makes me appreciate Brooks’s clean bill of health even more, and I rest easy knowing that he won’t have to fight FA like I do.
We found out we were pregnant with my daughter on my 29th birthday (September 2016). My pregnancy with her was smooth and healthy. We progressed perfectly, and I just focused on staying stable, trying to get as much rest as possible — not an easy feat when you have a 2-year-old, too! Collins was born in May 2017, weighing 7 lb., 8 oz, and measuring 20.25 inches long. She completed our family so perfectly, and we just adore her.
My journey through pregnancy with FA has taught me not to let anything hold me back. If you want a family, make a family! Don’t let obstacles — be it a disease or other situations — take your dreams away from you. Life is a beautiful gift and it is what you make of it. Everyone has obstacles to overcome and challenges thrown their way, but what we choose to do in the face of those challenges reveals our true character. Persevere. Life is worth living to the fullest!
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