Cystic Fibrosis Awareness Month: Gray's Story - Nemours Blog


Cystic Fibrosis Awareness Month: Gray’s Story

Two days after his birth, Gray started having gastrointestinal complications. It was found that his lower intestine was in a knot and his meconium was so compacted, the surgeons’ tool couldn’t clear it out. Gray was immediately admitted to the NICU and taken in for emergency surgery, before his mother was even discharged from the hospital.

Six days after he was born, “We ended up getting a call from Nemours Pulmonology confirming Gray’s diagnoses of Cystic Fibrosis. They told us that he has ‘double delta f508’ and that he has one of the most common genetic mutations for CF,” says Gray’s mother, Lauren. “The phone call was brief, and everything was a blur. We were told that his mutation qualified for really good treatments and that he would have a good prognosis!”

“Gray was born with a common condition in children with cystic fibrosis called meconium ileus in which a portion of the intestines are blocked,” says Gray’s doctor, Dr. Charles McCaslin. “Sometimes the blockage can be cleared and in some extreme cases a portion of the intestines must be surgically removed instead.  This can lead to prolonged hospitalization, sometimes feeding tubes or even long-term intravenous feeding called TPN.”

“Care for infants with cystic fibrosis mostly focuses on nutrition in the first year or so of life,” Dr. McCaslin continues. “Children like Gray need 1.5 to 2 times the calories of children without CF in order to grow well and in addition to that they need special vitamins, table salt mixed into their bottles, pancreatic enzyme replacement (sprinkled onto a spoon full of applesauce) with every single feeding and monthly visits to a CF care center.”

“With Gray, CF is almost all we have ever known,” says Lauren. “His first two months were spent in the NICU, where Mama and Daddy never left. Everything stopped. What was intended to be a relaxing time at home with our newborn became living at the hospital. Gray’s sweet newborn days were spent attached to PICC lines and leads.”

“After spending two months in the NICU, we now have the strongest boy who loves meals,” says Lauren. “We owe our CF team at Nemours so much. Getting Gray’s diagnoses was one of the scariest things we have ever been through. Our pulmonologists spent almost every day with us, even Christmas, answering countless questions, teaching us and getting to know us. We see our Nemours family monthly and couldn’t have asked for a better team!”

Gray will be followed by Nemours until he is 18 years old. “We will continue to follow their guidance when it comes to his CF care,” says Lauren. “He is thriving right now and has fully recovered from surgery. Mama will be working from home, and we are blessed to be able to keep him out of daycare and away from extra germs. We also started an Instagram (@mortonandmotts) to educate, bring awareness, and connect with other CF families.”

“I’ve been taking care of children with cystic fibrosis for more than 10 years and have seen really amazing and drastic changes in the lives of these kids and families,” says Dr. McCaslin. “What used to be tragic phone calls to deliver the newborn screen results with guarded prognosis, talk about frequent hospital stays, lung transplant and even death in early adulthood has completely transformed to really positive and hopeful discussion. The scientific community has made amazing breakthroughs in care for children with CF, so now I get to talk about a lifelong but manageable disorder with hope for much fewer, if any, hospitalizations and long outlooks on life, including going to college, getting married, and even starting their own families someday.”

When asked what advice he would give to other CF parents, Gray’s father, Dennis, says, “Turn to your team, not Google. Educate yourself, but only learn from the accredited sources. Use social media to connect with others who share the same diagnosis, are going through the same things and listen to their stories. Stay up to date on new information, studies and breakthroughs. Last but not least, give yourself and your partner grace. You are learning and growing together, and you can do this!”

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