Advice for New Parents of a Child With CF

I was heartbroken when I learned my baby would be born with cystic fibrosis. However, my son's CF care team changed my perspective and connected me with other mothers of children with CF who became lifelines of support for me.

| 4 min read
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Marykate Armstrong
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Becoming a parent for the first time is scary. Becoming a parent for the first time during a pandemic is really scary. Becoming a parent for the first time -- during a pandemic -- to a child with cystic fibrosis is downright terrifying. It may seem like it now, but you are not alone. In my experience, finding your CF tribe is one of the most important things you can do for yourself and your child.

When my husband and I decided to start our family after 10 years of marriage, I thought we had planned for everything. During my pregnancy, our doctor informed us that our genetic testing had come back, and we were surprised to find out we were both carriers of cystic fibrosis. Neither one of us had a family history of CF or any knowledge of it. After meeting with a genetic counselor, we became terrified of the possibility that our son would have this terrible disease.

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We elected to have an amniocentesis, which confirmed our worst fears. Our world was rocked. We researched the internet and found only negativity and worst-case scenarios. For the next week we mourned. We mourned the life we thought we would have when we started our family. We mourned the perfect healthy son we would never have. As my husband informed our families of the diagnosis, we were touched by the positivity and support we received.

We set up an appointment at Children's National Hospital in Washington, D.C., to discuss what a life with a child with CF would mean.

We expected to be met with the same negativity we had found on the internet. Instead, Children's was a breath of fresh air and brought us our first glimmers of hope.

 Care team members informed us of all the advances in treatment and helped us to understand a happy life can coexist with CF. Our care team includes a wonderful social worker who linked us with two other families who were in similar situations to ours -- first child, male, with cystic fibrosis.

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I cannot express the gratitude I have for these women and how important this bond is for me. Being a new parent, you constantly have questions about what you and your baby should or should not be doing. When you add in CF, the questions quadruple. These moms have become my lifeline. I can reach out to them about anything CF-related or not -- whether it is a question about treatments and medication or just an opportunity to vent to someone who really understands what I'm feeling and going through.

Even if you already have a strong network of family and friends like we do, you need the support of families who are dealing with the same fears and struggles as you day-in and day-out.

My advice to other CF families is to reach out and find your CF crew. Get involved in the CF community, and listen to the daily trials and triumphs of other families. Together, we can build happy, healthy lives.

Interested in sharing your story? The CF Community Blog wants to hear from you.

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Topics
Parents & Guardians | Diagnosis
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Marykate and her husband, Eric, are originally from Tennessee, but now reside in Northern Virginia with their son. Marykate is an avid marathon runner and excited to share that passion with her son. Marykate is involved in her local Cystic Fibrosis Foundation Chapter through CF Cares groups and is looking forward to more opportunities post-COVID-19.

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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.