BY GUEST BLOGGER, RACHAEL HAVEY

Updated in September 2019 (Originally posted in February 2017 at www.cff.org)

When our son Dean was born in June 2011, it wasn't long until we learned that he had cystic fibrosis (CF). As any parent of a child with any disease 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.  To say our lives were turned upside down would be an understatement.

The first year of Dean’s life 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 one 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 agreed years before having children 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 if we decided to start a family we wanted more than one child. So, as Dean grew, we slowly started to discuss the idea of having another baby.

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.

Knowing about all of the risks and the percentages made it very hard. 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? If the baby had CF would that child hate us for it? With these thoughts and questions 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 before 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, 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 asks him about his medicines. Dean reads to her and tries to calm her when she is upset.  He would do anything in the world for his little sister - even when she makes him crazy.

When I first wrote this post back in 2017, I received lots of feedback - some positive and some negative, from people living with CF, as well as siblings, parents, and family of people living with CF. I still get emails from parents trying to decide if they want to have a second child who have come across the old post. All the responses - the good, the bad, the angry, the scared - I totally understood. It was so difficult for us to decide to have a second child. And though we live with Dean and support him in his CF journey every day, we do not have CF and his life is different from those around him. If I could take CF away for him, I would in a heartbeat.

I continue to be thankful everyday that Renley does not have CF, but I am also confident in our decision and know we (and she) would have been ok if she had CF. It was a tough decision to make, a very personal decision for our family, and it took us longer than we had planned. But now that we have Renley, our family of four is complete, and we would not change a thing.