The Lexington Times

Free, AI-powered local news for Lexington, Kentucky

This is the machine-readable AI-summary surface. The human-edited edition lives at lexingtonky.news. How we make these.

Illustration for UK team pioneers prenatal CF drug therapy in groundbreaking case
Illustration generated by AI

UK team pioneers prenatal CF drug therapy in groundbreaking case

· Source: University of Kentucky News

LEXINGTON, Ky. — In what experts say is a first-of-its-kind collaboration at the University of Kentucky, a multidisciplinary medical team guided an expectant mother through an innovative and experimental treatment to help her unborn daughter diagnosed with cystic fibrosis.

When Ali Grise of Richmond learned during a routine 20-week ultrasound that her daughter Hattie would be born with the genetic condition, she embarked on a determined quest to give her child the best possible start, according to a feature published this week by UK News.

Cystic fibrosis is a genetic condition in which the body produces thick mucus that affects the lungs, pancreas and other organs. While there is no cure, treatments have improved dramatically. The predicted life expectancy for CF patients has increased from 40 years to 71.6 years if Trikafta drug therapy is started during adolescence.

Grise learned that her baby carried the same genetic mutation treatable by Trikafta, a medication typically approved only for patients older than 2. After discovering sparse but promising case reports of pregnant women taking the drug to pass its effects through the placenta, she requested to begin the medication herself — uncharted medical territory.

Dr. John O'Brien, director of UK HealthCare's Division of Maternal-Fetal Medicine, consulted with a team including Dr. Jamshad Kanga, a pediatric pulmonologist and world-renowned CF expert; neonatologist Dr. Divya Khattar; maternal-fetal medicine fellow Dr. Brittany Hood; and pharmacist Lauren Kormelink of the UK HealthCare Cystic Fibrosis Clinic. Together they weighed significant risks, including potential liver damage and cataracts in Grise herself, against potential benefits for Hattie.

Another obstacle was cost. At nearly $30,000 monthly, the medication was not covered by insurance for off-label use. Kormelink worked with Grise's insurance company to obtain full coverage through an internal assistance program.

At approximately 30 weeks gestation, Grise began Trikafta under close monitoring. Hattie was born on March 8, 2026, and still required neonatal intensive care for an intestinal blockage called meconium ileus. However, the blockage that appeared severe on the initial ultrasound had subsided enough that she avoided surgery — a potential result of the prenatal treatment.

"Though we did not see the miraculous reversal of the ultrasound findings we were hoping to see, I do believe this treatment helped slow the progression of Hattie's disease, contributed to her short NICU stay, and helped her to avoid surgery immediately after delivery," said Dr. Brittany Hood.

After 16 days in the NICU, Hattie went home to her family. "We were stepping into uncharted territory, but everyone came together and was on the same page," Grise said. "I feel like UK is pretty unique in that."

This article was generated by AI (claude-haiku-4-5-20251001) based on source material from University of Kentucky News, enriched with 2 web searches. The original source is available at https://uknow.uky.edu/uk-healthcare/uncharted-territory-one-mother-s-advocacy-rallies-multidisciplinary-team. How we make these.
House ad · playlextown.com Walk, drive, fly — and plow — a tiny downtown Lexington. Free multiplayer browser game. No download, no account. The mayor has one rule about her street. PLAY →