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Pregnancy and Friedreich's Ataxia

January 5, 2015

I found out that I had Friedreich’s Ataxia (FA) on August 19, 2013. At first, I thought that the entire future I had planned for my husband Kyle and I was gone. I thought that I would physically deteriorate quickly and have a poor quality of life, and most sad of all, I thought that having children was out of the question. After meeting with several specialists, I learned more about my specific case of FA and 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.”

 

Before Kyle and I made the decision to start a family, we wanted a little more information. The great people over at the Friedreich’s Ataxia Research Alliance (FARA) provided us with information on a study done with pregnancy in FA patients. That study can be found here. It was reassuring to me that other women with FA had successful pregnancies that were really no different than non-FA patients. Besides inheriting FA, babies of FA patients are at no higher risk of inherited health complications or genetic diseases than those of non-FA patients.

 

The next step we took was to get Kyle tested to see if he was a carrier for FA. To have FA, you have to inherit the faulty FA genes 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 child(ren) would HAVE FA, they would just be carriers. If Kyle were a carrier, our child(ren) would have a 50% 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 found out we were pregnant in March of 2014. I went to my regular OB/GYN and the pregnancy was confirmed – we were really going to have a baby! Eek! I was the first pregnant FA patient my doctor had ever had, so she referred me to a specialist just to make sure everything was OK. The specialist did a few additional tests on the baby and we were given the all clear! Our baby was happy and healthy. The specialist “signed off” on me and I proceeded throughout my pregnancy with my normal OB/GYN.

 

My biggest fear during my whole pregnancy was falling. Balance issues are my main FA symptom and I had no idea how pregnancy would affect my balance. Luckily, pregnancy didn’t seem to accelerate or magnify my symptoms. I just took extra precaution when walking or exercising. I was able to ride my trike and swim all through my pregnancy (nausea permitting!). In fact, I went for a 12 mile ride at 37 weeks!

 

Swimming was a life saver during pregnancy. I have loved swimming my whole life, but I have a renewed passion for it since I lost the ability to go for a jog. With swimming, I feel a freedom that I was beginning to feel was lost due to FA. I can accomplish something active by myself – of my own accord. It is incredibly liberating. And while pregnant, it was a major relief to be semi-weightless for a little bit. It was so nice to move my joints around and not have the extra pregnancy pounds weighing on me. I highly recommend swimming during pregnancy for everyone (with or without FA!)

 

My pregnancy was very normal and fairly uneventful. My baby and I progressed as we should and everything was great! I was induced into labor at 39 weeks and the process was very smooth. I checked into the hospital at 7pm on Wednesday night and was induced at 8am on Thursday morning. My contractions started around 8:45am and I got my epidural at about 9:45am. The epidural made me very tired, so I went to sleep around 10:30am. I slept for a good while! I woke up at 2pm and told the nurse that I felt a little weird, so she checked everything and said “Well Kendall, you feel weird because your baby is here, I can see his head, it’s time to push!” 7 quick pushes later and Brooks David Harvey was born at 2:36pm on Thursday, October 23, 2014. He weighed 8 lb 2 oz and was 20 inches long.

 

Being a mom to this sweet baby boy 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 him. It is nice to be praising God and thanking Him for giving me this joy instead of blaming him for giving me FA. It has been an emotional last couple of years, 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 from the pediatrician even more, and I rest easy knowing that he won’t have to fight FA like I do.

 

All of this to say – DON’T LET ANYTHING HOLD YOU BACK! If you want a family, make a family! Don’t let your obstacle (disease, situation, or whatever!) 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, my friends! Life is worth living to the fullest!   

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