Deciding to Have a Second Child When Your First Child Has CF

My husband and I had always said that we would either have no kids, or we would have two. But, when our first child was diagnosed with cystic fibrosis, we were suddenly faced with a difficult decision.  

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Rachael Havey
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When our son Dean was born in June 2011, it wasn't long until we learned that he had cystic fibrosis. As any parent of a child with CF knows, getting the diagnosis is one of the hardest days of your life. We were first-time parents to a newborn with a chronic disease that we knew nothing about.

The first year was a blur of doctors' appointments, learning about CF and adjusting to life as parents. It was scary and wonderful all at the same time. When Dean turned 1 and was doing well, I breathed a huge sigh of relief. But, at the same time, there was still something my husband Matt and I had always said to each other that was lingering in the back of my mind, and it deeply scared me.

Matt and I had always said that we would either have no children, or we would have two. We didn't have any clear reasons behind this, but in our hearts we always knew that we wanted more than one child, if we had any. So, as Dean grew, we slowly started to discuss the idea of having another child.

When Dean was born, we had NO idea what CF was or that our child was at risk. We did not know that we were carriers and we were not prepared. We knew that we would be prepared the second time around, if we did have another child with CF, but we also knew about the possibility of CF and the potential risk.

I wondered if it would be fair to bring a child into the world when I had this knowledge going in. Would I be a bad mom if I knowingly decided to have a baby and then that baby had CF? I feared that our child would hate me for it. With these thoughts constantly going through my head, I kept putting off the decision.

Our friends who had kids the same age as Dean were already having their second child. Meanwhile, we were stuck. Before we knew it, two years had gone by and we still couldn't decide what to do.

So, we started talking to other families who had children with CF. We talked to parents who have multiple children with CF and had no idea beforehand. We talked to parents who took precautions with their next child to ensure that they wouldn't have CF. We also talked to parents who “rolled the dice.” My husband and I talked to each other, doctors and family. We thought, we talked and we waited some more.   

Then, in the summer of 2014, we decided that we would go for it. We agreed that we knew what life with CF was like and that we were prepared if we had another child with CF. We also knew that research is changing every day and people with CF are living longer, healthier lives than ever before. But still, I struggled and I worried. I actually started looking at adoption agencies the week I found out I was pregnant!

We didn't do any testing during the pregnancy to see if baby number two had CF, although we did do an extra ultrasound to check for any bowel obstructions -- just to be prepared. When our daughter Renley was born in April 2015, we were on pins and needles for the first week waiting on the results of her newborn screening. When she didn't want to breastfeed in the hospital, I went straight to formula. After all, I didn't know if she had CF and -- if she did -- she needed to eat! The days went by and -- although we weren't seeing CF symptoms like we did with Dean -- we didn't want to get our hopes up. When we finally got her newborn screen back, it was negative -- for everything. She wasn't even a carrier.

I cried. I could not believe it.  

Now, as I watch Dean and Renley play together 20 months later, I cannot imagine not having her in our lives. She adores her big brother and follows him around everywhere. She sits with him while he does his treatments, and Dean would do anything in the world for his little sister.

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I am thankful every day that Renley does not have CF, but I also know that we would have been okay if she did. It was a tough decision to make, and it took us longer than we had planned. But now that we have Renley, our family of four is complete.

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Topics
Family Planning & Parenting | Parents & Guardians
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Rachael is the mother of her daughter, Renley, and her son, Dean, who was born with cystic fibrosis. A graduate of Indiana University and University of Indianapolis, she now works for AdvancED - Measured Progress, a non-profit education organization where she provides support and professional learning to school and system leaders. Rachael and her husband, Matt, are very involved with the Indiana chapter of the CF Foundation. Matt is a member of the Indiana chapter's board, while Rachael volunteers at events and has been the chair of Indiana's Cycle for Life since the first ride in 2013. Rachael is also a member of the Foundation's Community Voice Editorial Board, Research Voice, and participates in a variety of advocacy efforts. Rachael and her family live in Indianapolis. You can contact her at rachael.havey@gmail.com or @RachaelHavey on Twitter.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.