Tips for Parenting a Child With Cystic Fibrosis

Parenting a child with cystic fibrosis is a big job, but it is not one you need to be overwhelmed by. The parents in our community have learned how to manage their child’s cystic fibrosis, and how to help their children live happy and full lives.

To learn more about what is working for them, we reached out on the Cystic-Fibrosis.com Facebook page. We asked community members: “Do you have any tips for the parents of children who are newly diagnosed with cystic fibrosis?”

More than 50 members of the community shared their best advice. Here is what they said.

Live in the moment

When you first learn about your child’s diagnosis, it is a lot to take in. But, if you dwell on it and everything that you will have to do in the future, you will likely get overwhelmed. Instead, think about what you have to do today—and what is going well. If you remember to live in today, you will remember just how much there is to be thankful for!

“Do not let yourself get overwhelmed. And do not get consumed by the what-ifs. You can do this!”

“At first all the doctor visits and new medicines can be overwhelming. It will get easier over time. Now it is just natural.”

“Take it one day at a time.”

Enjoy your baby

It can be easy to focus on what could go wrong—and to spend so much time stressing that you miss out on the moments with your child. All children grow up fast, so if you can, try to take a step back from worrying to be present in the now with your child.

“Enjoy your baby—they are so precious. Your baby is so much more than CF.”

“Enjoy your child.”

Let them experience things

Because the environment so affects kids with CF, it can be tempting to want to insulate them against any potential dangers. But, that would also mean keeping them from a lot of the fun stuff also. Yes, low lung capacity is limiting, but it does not mean your kids need to miss out. Several of you made this point, stressing how important it is to let your kids have fun and experience life.

“Please, please, please ... let them be a kid! Do not live in a bubble!”

“Do not put them in a bubble. Make sure they feel like everyone else. Let them have sleepovers, outings and extra-curriculars. Set them up for success.”

Seek information from your clinic

Several in the community stressed how important it is to not read too much on the Internet about CF. Your kid’s symptoms may be different from the next kid’s, so it might be best to speak directly to your child’s doctor about what is best for him or her as opposed to reading too much online, which could only end up scaring you.

“Do not Google it. Instead, listen and trust your doctors.”

“Stay off of the Internet (as difficult as that is) and get your information from your clinic first.”

Find a good CF care team

This is key: Make sure you are choosing doctors who specialize in CF. The more your doctor knows about CF, the more they are able to steer your child in the right direction. It may take some time to ask around and research to find the right one, but in the long run, this will save you time and money as the treatment a CF doctor suggests will often work better and faster than what someone with less experience prescribes.

“Find good doctors that are specifically trained in CF.”

“Trust your healthcare staff! They will make sure you know what you are doing.”

“Do not feel like you have to learn EVERYTHING about CF. Let your clinic staff teach you as you go.”

Do not be scared of the treatments

Medicine for treating CF has come a long way in the last 20 years. Many CF patients who were diagnosed as children are growing up now to attend college, get married and have children. Today’s medicine does an incredible job of prolonging life—and offering your child a good quality of living all the way.

“Do not be scared of the meds and treatments. What they have now is incredible. We are living longer, better lives. I’m 54 and not stopping.”

“Be patient and encourage all treatments.”

We want to say thank you so much to all the members in our community for offering so much helpful advice about CF. We are so grateful for the generosity of our community members.