31 Days of CF: Mothers, Go With Your Gut Instinct

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by BNS Staff |

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cystic fibrosis infants | Cystic Fibrosis News Today | photo of Faith Clark's son V

Fizzy Clark’s son, Felton, 4, takes digestive enzymes to help him absorb nutrients and gain weight. (Courtesy of Faith “Fizzy” Clark)

Day 31 of 31

This is Faith “Fizzy” Clark’s (@thefizzbit) story:

Imagine looking at your newborn child and having a gut feeling that something is very wrong.

My baby was 7 pounds, 6 ounces. when he was born, but was already losing weight by the time he was 4 days old. I was told my breast milk wasn’t enough for him and that we needed to supplement with high-calorie formula. Even with the formula, he didn’t gain weight and was very sleepy all the time.

I knew I was a carrier for cystic fibrosis and suggested my son be tested for the disease. The doctor told me cystic fibrosis was a “disease that only white children get.” He was 7 weeks old and weighed less than 6 pounds. All his test results came back positive for cystic fibrosis.

I couldn’t even say those words without my voice cracking, my stomach dropping, and a lump in my throat that felt like it would choke me as I forced back my tears. I had so afraid for him. Would he live a healthy life, or would he suffer? There was so much we didn’t know and couldn’t predict. God has been our strength through it all. With prayer and with a routine, we are figuring out our groove, and I am so thankful!

Today, my son, Felton, 4, takes digestive enzymes with everything he eats so his body can absorb nutrients. He gains weight very well, though that’s not always the case for CF patients. He also does airway treatments twice daily — four times daily if he’s sick — to keep the mucus at bay.

Cystic fibrosis is a complex and vicious disease that affects the function of the entire body, causing it to over-produce thick, sticky, green mucus that causes infections, blocked ducts, malabsorption, lung disease, diabetes, pancreatic insufficiency, kidney issues, and a laundry list of other issues.

My goal in sharing my story is to be a voice and advocate for my son and other people living with CF. I want people to know the truth about this disease, that it doesn’t discriminate. All it takes is for two people to carry the CFTR gene and the chance of inheriting the disease becomes one out of four. Ethnicity doesn’t matter.

I urge all mothers to go with their gut instinct if they feel that something is not right with their baby. I’m so glad I went with mine. Had I not, Felton could have been much sicker than he was at 7 weeks. I’m so thankful that I did not ignore my inner voice.

Cystic Fibrosis News Today’s 31 Days of CF campaign will publish one story per day for Cystic Fibrosis Awareness Month in May. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofCF, or read the full series.