Family Building Friday: The Randazzo-Parrott Family, Pregnancy and CFTR Modulators

I always hoped I would become a mother one day but never allowed myself to get my hopes up in fear of it not happening. When I was six years old my parents received the diagnosis that both of my younger brothers and I had cystic fibrosis. Our lives changed forever as we entered the world of respiratory treatments, medications, homecare nurses, doctor appointments, and hospital stays. Throughout my teenage years I was on iv antibiotics every three to four months and after more than 30 PICC-lines I eventually had a portacath installed in my chest. I had little hope of ever becoming a mother and my focus was on enjoying life, going to school, working at a restaurant, and staying healthy.

At the age of 24 I decided that I needed to make some changes and I wanted more for my life. I began going to school for my Master’s in Education and got accepted into Teach for America in Jacksonville, Florida. With the help of my family and care team I found a CF center in Florida and began preparing for the move by making lifestyle changes to ensure I stayed as healthy as possible during this time.

In the summer of 2014 I moved down to Jacksonville and six months later met David, the love of my life. We joke around now that we did things backwards: we fell in love, moved in together, bought a house, had a baby, and are now getting married. As cliché as it sounds, David and I are complete opposites yet perfect for each other. He grew up in Georgia and I grew up in New York (that speaks for itself), he is extremely social and extroverted, while I am an introvert, and he is a Braves fan whereas I prefer the Mets. Despite our differences we both aim to be as healthy as we can and (lucky for me) David is a fitness fanatic whose life is centered around physical fitness and nutrition. On days when I’m not feeling great he pushes me to exercise and keep my lungs and body healthy. Unless it’s a day when I’m coughing up blood and am not able to exercise, David has learned that it helps me breathe easier in the long run. Sometimes this doesn’t always go over well (especially if I’m exhausted from being up all-night coughing) but looking back it has helped me to be in the shape I am in today.

Living a healthier lifestyle allowed me to keep my lungs stable until the summer of 2017 when my CFTR mutations were approved for Kalydeco, the first therapy to address the underlying cause of cystic fibrosis. It took three insurance claim denials (not a cheap drug) and many frustrating calls, but in November of 2017 I was approved and received Kalydeco. Only one month later (and still taking birth control) I had a funny gut feeling and took a pregnancy test that read positive. In shock, I went to CVS, bought more pregnancy tests, and eventually 11 pregnancy tests later I believed I was pregnant! David came home from the gym, I told him to look in the bathroom (he expected to see a bug waiting to be killed), saw the pregnancy tests, and was immediately overjoyed. I, on the other hand, was in complete shock!

Upon realizing I was pregnant I sent my doctor a message who called me soon after to discuss a plan. We went through each of my medications and he told me which ones to stop or continue. He also told me he believed that with Kalydeco the benefits of staying on it during pregnancy would outweigh the risks. I began to do my own internet research on CF and pregnancy and talked to other women with CF who had babies and stayed on Kalydeco. To my surprise, I found an online support group for women with CF who are mothers and connected with other women who had been in my situation. It was a huge comfort to hear from other CF-women on Kalydeco who had healthy pregnancies and babies.

My pregnancy was overall healthy, and my lung function increased while pregnant because of the Kalydeco! Two of my happiest days during pregnancy were when we found out David is not a carrier for CF and when we found out that the baby was healthy. Now as a mom with CF, treatments and exercising are more important than ever (babies require LOTS of energy) and David provides extra support during those times. My son was born on August 28, 2018 and is beautiful, happy, and most importantly: healthy. We are so in love with him and he is the joy of our lives. Being a mom with CF is hard but I wouldn’t change it for the world.


Lauren Randazzo is 28 years old with cystic fibrosis

****Nothing on this post should be considered medical advice. Such advice can only be given by a physician who is experienced with cystic fibrosis. The contributors on this blog cannot be held responsible for any damage which may result from using the information on this blog without permission of a medical doctor experienced with cystic fibrosis.****