Mar 24, 2022, 1:45:27 PM CDT Mar 28, 2022, 7:29:39 PM CDT

Cystic fibrosis won't define Kinsey's future

Kinsey's family navigates her first year with support from the team at Children's Health.

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Kinsey smiling while in a swing set. Kinsey smiling while in a swing set.

In many ways, Kinsey's first year has been just what her parents, Lindsey and Cory, expected it to be. Her birth and delivery were free of any complications, and she remained in the 95th percentile for height and weight. She spends most of her waking hours cruising around her house, chasing her big sister Brynley and checking out the dog bowls to see if they've left anything behind. But, because of a genetic condition, her day-to-day routines to manage her disease set her apart from her peers. They involve breathing treatments and daily medications that will likely be a part of her regimen for the rest of her life, but her family is determined to not let it define her future.

Kinsey was born in December 2020. She was a strong and big baby, weighing more than 9.5 pounds. She came home shortly after delivery and seemed to be perfectly healthy, eating well and showing no signs of any health issues.

An unexpected diagnosis as a newborn

Kinsey being held in a family member's armA few weeks later, however, Kinsey's pediatrician informed her family that her newborn screening had indicated she had cystic fibrosis, an inherited genetic condition that affects the body's ability to produce mucus, which can cause breathing difficulties and issues throughout the digestive tract. Kinsey was quickly referred to the Children's Health℠ Claude Prestidge Cystic Fibrosis Center for additional testing and treatment, an experience Lindsey describes as, "a bit surreal."

"You never imagine taking your newborn to a children's hospital," Lindsey says. "But the whole team was beyond caring. They felt our initial pain and our fear of the unknown and did a great job of preparing us for what to expect in the short-term and down the road."

Kinsey began taking pancreatic enzymes before every meal and started daily manual chest percussion therapy to break up any mucus that might form in her lungs. Around the time she turned nine months old, Kinsey transitioned to daily "vest treatments," wearing a vest that inflates and vibrates rapidly to help keep her lungs clear. She also has a nebulizer breathing treatment available at home if her parents can tell that she may need some additional support. Her mom says that she has done a great job tolerating it all.

"There is some fussing, but overall, we can't complain, and we are so thankful for that," Lindsey says.

Kinsey's care empowers her

Kinsey is closely monitored by the team in the cystic fibrosis clinic and is evaluated every two months to ensure she is responding to the therapies and determine if adjustments to her treatment are necessary. For Lindsey and Cory, having a support system that empowers them to safely care for their child at home has been invaluable as they navigate her first year.

Little girls sitting in a field of grass posing for pictureThough it's uncertain exactly what Kinsey's cystic fibrosis journey might look like, her family is hopeful that she will continue to respond well with treatment and that the precautions they take to keep each other safe will give Kinsey the best chance at staying healthy. Despite the unknown, there's one thing that's clear: Kinsey's family and her team at Children's Health will be with her every step of the way to ensure her future is bright.

"When we first found out about Kinsey's diagnosis, the doctor reassured me that she was going to live a normal life, playing sports, traveling to Europe when she's older and doing anything she wants to do," Lindsey says. "Her dad and I just hope she always knows how loved she is and knows she can do anything she sets her mind to; CF doesn't define her!"

Learn More

The Claude Prestidge Cystic Fibrosis Center at Children's Health focuses on both pulmonology and gastroenterology to give children with CF the most thorough treatment possible. Learn more about our cystic fibrosis program and services.

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cystic fibrosis, pulmonology, patient story, breathing

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