A family’s fight: Winchester mom speaks out on experience with child with rare medical condition

Mother Kaitlin Clem is giving her best advice for parents going through similar experiences with their children.

LEXINGTON, Ky. (WTVQ) – A Winchester baby suffering from a life-threatening medical condition is alright thanks to modern medicine. Now, her mom is giving her best advice for parents going through similar experiences with their children.

Maisyn Clem was born in May 2021, the youngest of four children in the Clem family. She was born with an extremely rare condition: a tracheoesophageal fistula. Essentially, Maisyn was aspirating food and water into her lungs every time she ate for the first year of her life.

According to Maisyn’s doctor, Kentucky Children’s Hospital pediatric surgeon Dr. David Worhunsky, the condition can be hard to diagnose.

“About one in 3,000 or 4,000 live births will have a fistula. In Maisyn’s case, she had something that only occurs in about three to four percent of those,” said Dr. Worhunsky.

Maisyn’s mother, Kaitlin Clem, says she started noticing Maisyn was having respiratory issues back in January. Thinking it was related to the family’s recent COVID-19 bout, she took Maisyn to the doctor. Months and several more doctor’s visits later, there were still no solutions to Maisyn’s illness.

“We were trying. We got frustrated. We were angry, because we were doing everything that we could,” said Clem.

The threat to Maisyn’s life became apparent in May when Clem says she still wasn’t better. She took Maisyn to the hospital, and after specialists examined her, they determined Maisyn needed to undergo a three-and-a-half hour surgery.

“It was a very scary time, it was very…just the unknown. It was horrifying,” said Clem.

She says what helped her most through this time was her community. She has some advice for parents with children with rare conditions and diseases:

“There is a whole community of people out there of children that have dealth with the same things. There are support groups for that. My biggest thing is to advocate,” said Clem.

Thankfully, Maisyn is doing just fine now: she’s happy and healthy. Clem says she’ll continue to have check-ups for a while.

Because of her experience with Maisyn, Clem says she’s planning to go to nursing school to help other children like her daughter.