When I was pregnant with Nora I agreed to all of the tests the Naval Hospital Camp Lejeune (and the state of NC) wanted me to do. One of which was the cystic fibrosis screening. I later went to a routine appointment and found out that I am a cystic fibrosis carrier. My world stopped. I had always joked with my husband that my family has superior genetics. We have good hair, soft skin that isn’t prone to acne, and are all athletic and healthy.
But here I am, a cystic fibrosis carrier. I researched cystic fibrosis to try to help myself feel better and only found myself getting sadder and sadder. Cystic fibrosis affects the lungs and digestion. It does not have a cure. It means a lifetime of medical procedures and treatments. Most people with cystic fibrosis don’t live past the age of 35.
God must like math because if I’m a cystic fibrosis carrier and my husband, Garrett, is a cystic fibrosis carrier then our child has a 25% chance of having cystic fibrosis, a 50% chance of being a carrier (like me), and a 25% chance of not being a carrier and not having cystic fibrosis.
Garrett and my plans of having 6 children were crashing down around me. With statistics like these I couldn’t help but wonder how often we would actually play the lottery and gamble with our family?
My friends, family and doctors tried to calm me down. We didn’t know the full story yet. We don’t have Garrett’s test results. Just send Garrett to the lab, right? That’s not so easy when you’re a military family and your husband is deployed. He had no way of getting the testing we needed done. So I started to go and see a specialist and started praying fervently for my unborn child.
Garrett’s parents, confident in their genetics, approached Tricare about getting tested in lieu of their son. They were hoping to set my mind at ease and give us all the answer we were looking for.
The test results came back. Garrett’s mom is not a cystic fibrosis carrier. Garrett’s dad is. He is a carrier for the exact same (most common, most severe) form of cystic fibrosis that I have. That was not good news for my unborn child. Now, we have a 50% chance that Garrett is also a carrier and no way to tell for sure until Garrett gets home –four to six weeks before I deliver.
This resulted in many months of worrying and praying over our unborn child. Thankfully our prayers were answered and Garrett is not a cystic fibrosis carrier! We can have as big of a family as we want without worrying about passing along a genetic disease! (Well, our kids may be carriers like me, but hopefully they’ll marry someone who isn’t a carrier).
Are you a Cystic Fibrosis carrier? Do you know someone who is?