My Journey To Becoming A CF Parent: Part II

Read Part I here.

I will never forget the day we received the phone call. It was a Wednesday, and Rhett and I were both at work. The genetic counselor called and said she had the results from our chorionic villus sampling (CVS, so I quickly called Rhett and conferenced him in. I went to an empty office in our hallway and sat down, a pit in the bottom of my stomach.

A prenatal cystic fibrosis diagnosis

Our counselor confirmed that our daughter had two copies of deltaF508, and therefore, had cystic fibrosis. The wave of shock, sadness, and grief that overtook myself and Rhett is indescribable. I can honestly say that was one of the most difficult days of my life. From there, everything was a foggy blur. I called my mom, left work early, and met Rhett at home.

We began the grieving process. We grieved for our baby’s future, for the idea of our “perfect” pregnancy. We grieved for the life we thought we were headed for but had suddenly taken a different turn. In my grief, I made mistakes. I turned to Google for answers and was immediately terrified. I saw pictures of adults with CF in hospitals hooked up to machines, fighting for their next breath. I read life expectancy ranges. I noted typical medicine costs. I began to spiral.

Preparing for our baby

I also made some good choices that impacted both my outlook and my future as a CF parent and advocate.

Reaching out to organizations

I contacted our local Cystic Fibrosis Foundation chapter and received information on helpful resources and how I could become involved with the organization. I also made an appointment with the CF clinical team at the Children’s Hospital of Philadelphia (CHOP). The nurse returned my phone call and asked what genetic mutation the baby had and I said I didn’t know--in hindsight, this makes me laugh, because now I can recite double deltaF508 without the blink of the eye.

Meeting with our CF clinic

The pivotal turning point was when we met with the director of the CF clinic and one of the clinic nurses. The doctor looked at us and spoke the words that changed our outlook on cystic fibrosis forever: “Your daughter is going to be fine.” He was aware of my cousin’s death from CF and how that contributed to our fear and grief, and he was intentional in telling us how far the medical advances in research and treatments had come not only since her birth in 1987, but since her death in 2014.

Getting answers

We asked many questions and he took care in answering every one thoughtfully and directly. Does one of us need to quit our jobs? Can we still travel? Do we need to get rid of our cats? Can she participate in sports? He answered these questions in a way that still sticks with me: “Would you send her to daycare if she didn’t have CF? Yes? Then send her to daycare. Let her play sports. Travel the world. Certainly, take the necessary precautions for a child with a chronic disease and a vulnerable immune system, but do not keep her in a bubble.”

Getting excited for our baby

We left that meeting with workbooks, DVDs, brochures, and most importantly, hope. We were still sad and scared, but we felt supported, educated, and a little more prepared. We had a plan for ourselves and for our daughter, and from that point on, we were able to return to the feelings of joy and excitement for our first baby.

My advice for a CF diagnosis

My advice to new parents learning of a cystic fibrosis diagnosis, no matter when this takes place, is to allow yourself to feel the emotions that come with it. You are grieving, whether or not you are still pregnant or holding your perfect baby in your arms.

Allow yourself to experience that grief and sadness, even while feeling joyful about your child’s birth. Slowly, you’ll find the sadness and fear becomes a little dimmer.

Educate yourself, but do it carefully. Don’t overwhelm yourself with too much at one time. Find good resources and make gradual connections that will help support you. But most of all, look at your child and take comfort in knowing that wherever your CF journey takes you, you and your child are going to be fine.

Did you receive a prenatal cystic fibrosis diagnosis, or are you a parent or loved one of a child with cystic fibrosis? Share your experience with us.