Breathe In, Breathe Out

Fitting Into Your Genes December 19, 2012

I grew up in a large family—I am the fourth of five girls (and don’t have any pity for my dad- he wouldn’t have changed a thing!). The seven of us, including my parents, have now become 20 when counting spouses, soon-to-be spouses, nieces, and nephews, with one more on the way. So it’s no surprise that as a kid I always wanted and assumed I would have a large family—I wanted 4 kids, avoiding anyone having to be a middle child, 3 girls and 1 boy. It did not matter in what order they came, but it was most important that they were all healthy.

I’m now 28 and married, with a very different family plan in mind. First, it’s important to say, primarily to my mom and mother-in-law, that Eamonn and I are not having children any time soon. Don’t get any ideas! But what I do want to share with all of you is an experience that I just recently went through, and that Eamonn and I will continue to think about as we decide when or if we choose to start a family.

As a woman, I have assumed that I will one day have my own children, experiencing the joys of pregnancy and becoming a mother. Since high school, before Angelina Jolie made it trendy, I also wanted to adopt children from abroad. After my trip to an orphanage in South Africa, that has since been questioned, but Eamonn and I continue to discuss domestic adoption. When I started learning about cystic fibrosis, having children was not on my mind—at all. At that point I was dating Eamonn, not thinking about marriage. As our relationship grew and I realized the probability that it wasn’t going to end, I started to really think about what CF meant for me, long term. I quickly came to understand the impact that it would have on us having children, which was far and away the topic that I have most grappled with since knowing Eamonn has CF.

What I most appreciated is how open and honest Eamonn and I were with each other as we began these mature conversations, which I never expected to have, nor think about until I was ready. For reasons that I am not going to explain I learned early that when/if we decided to have kids, it would not happen in a traditional manner. But what I could not control was the likelihood of having a biological child  who has CF or carries the gene.

geneticsWe all learn in freshman year biology about recessive and dominant genes. Actually, CF is a common example used by teachers/professors when reviewing this topic. Knowing that Eamonn has CF we are obviously aware that he has two recessive genes. To ensure that our children would not have CF I, then, cannot be a carrier. If I were a carrier, then our biological children would have a 50% chance of being born with the disease. For a long time this was hard for me to truly comprehend. I did not want to even be thinking about children let alone the concerns of their genetic make-up; I did not want to be having these conversations; I did not want to think about potential future decisions or choices Eamonn and I would have to make regarding having children.

Being that this was out of my hands, I could not allow myself to focus on it so much. I also didn’t want so much of my attention and energy revolved around our future, occupying time that we could be concentrating on the present. So I chose to put these matters to the side, knowing that someday, when I was more prepared to tackle them, we’d resume the discussions.

After Eamonn and I got married I realized that I wanted to know sooner rather than later if I was a CF carrier. More than I wanted to admit, I think not knowing was harder, feeling the burden of so many “what ifs…”. I eventually decided that I was ready to get genetically tested for CF mutations, along with other genetic conditions. However, it took me a long time to make the phone call to schedule the appointment with the genetic counselor. I think subconsciously while I no longer wanted to carry the burdens of not knowing, I was not prepared for what I did not want to hear.

I finally made the call and booked an appointment at the genetic clinic of Children’s Hospital, where Eamonn is a patient. Two weeks later Eamonn and I were meeting with the counselor. I thought the appointment would be relatively easy—I knew what I wanted to accomplish, it was clear as to why we were there, and I assumed that the actual blood draw would be the hardest part. Oh, how I was wrong. She asked so many questions, trying to understand our family’s backgrounds and explaining to us our options for testing, of which there were many. And though I was nervous from the get-go, learning that there was a 1 in 25 chance that I would be a carrier put a pit in my stomach (I thought it was far less likely). As the counselor explained everything to Eamonn and me, I fought back tears. Here I am, a happy 28-year-old woman married to the best person in the world, not yet ready to be a mom, but desperately wanting only the best for my children.

Two weeks after the appointment I had a missed call from an unknown number. I listened to the voicemail, not expecting the results so soon, shaking as I realized whom it was on the other end. We had decided that she could tell me the results in a voicemail so as to avoid phone tag. When I heard her say, “I have good news” I somewhat stopped listening to take a long deep breath. I know this might sound dramatic, but in the weeks waiting for the results, I tried to prepare myself for negative news—that I was a CF carrier, which meant there would be a 50% chance that each of our biological kids would then have the disease. I knew going into this experience that no matter the outcome Eamonn and I would deal with it together, but I simply did not want another hurdle to leap over.

Eamonn and I still have a lot to consider once we decide that we are ready to start a family. We have come to some resolutions—we do not plan for 4 children, it does not matter if we have boys or girls, domestic adoption is an option—but some questions and decisions we continue to ponder. Because I wish so badly that I could stop CF in its tracks, it is hard for me to know that our biological children will, no matter what, be carriers of this disease. But we are overwhelmingly thankful that we can feel more secure in having biological children who will hopefully grow up healthy (and happy). This experience has taught me, more than anything, to never take anything for granted. No one can assume their plans will turn out the way they expected—but appreciate what is given to you, and it might turn out even better than what you had in mind! My family, no matter the size, and no matter what imperfections it has, will be my world.

 

4 Responses to “Fitting Into Your Genes”

  1. Susan Says:

    As John Lennon said, “Life is what happens to you while you’re making other plans.”. Like you, we always thought we’d have a big family but, as things worked out, we ended up with the perfect family for us. You will too.

  2. Cheryl Ferguson Says:

    Each month when you do your post it touches my heart and makes me realize how lucky we are. You two will be the best parents if that is what you decide to do. You already are very wise to life and its challanges. Thank you once agian for sharing.
    Cheryl

  3. Tiffany Says:

    Hello! My name is Tiffany. I am 32 years old and my husband (of almost 8 years) has CF as well. I can personally relate to many of the posts you write. I had genetic testing done about a year after we were married, and am not a carrier of the disease. Eventually we did proceed with IVF and to make a long story short we now have two biological daughters, ages 2 & 4. They have been a blessing for sure. One thing I wasn’t prepared for in having children is the impact that school (and the germs there) have had on our family. When our oldest began preschool, and started bringing home colds which she shared with the rest of us (despite my crazy efforts of frequent hand washing, and scrubbing things down), my husband began getting sick. After 6 years with no infections or hospitalizations, he has been hospitalized four times this past year, and done numerous rounds of IV antibiotics at home. The hardest part about it is that I can’t be 100% there for him when he is sick because I still need to take care of the children, and have to work (since we need the insurance, and well, money to live 🙂 ). All that to say that parenting with CF definitely has it’s challenges, but we have no regrets about our decision to have children. Blessings to you as you and Eamonn decide what is best for you, and when the timing is right.

    • elanaalfred Says:

      Hi Tiffany! I’m sorry it took so long to write back. Thank you so much for sharing your experiences, through your comment and of course your blog. Your stories are amazing, and as I read your blog, I’m reminded of the CF community Eamonn and I have around us. Where is your family located? If you’re local to Boston I’d love to meet you!

      I hope your husband is doing well. Keep sharing your stories!


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