Congenital Central Hypoventilation Syndrome (CCHS)

SSM Health Cardinal Glennon Children’s Hospital

Willa's Story

Willa was three days old when she was transferred to SSM Health Cardinal Glennon Children’s Hospital for CO2 narcosis. After a month in the NICU, Willa received a diagnosis of Congenital Central Hypoventilation Syndrome (CCHS), a rare, life-long and life-threatening genetic disorder. For Willa, having CCHS means she doesn’t breathe when sleeping or eating, or regulate her body temperature, so she relies on a ventilator to keep her alive.

Willa’s condition is extremely rare; affecting only 1,400 people world-wide as of 2017. Willa spent four and a half months in the NICU where she endured a tracheostomy, a pneumothorax, pneumonia, and weeks of sedation meaning her family couldn’t pick her up!

Willa, like her name implies, is quite strong willed! She regularly yelled at her nurses, nurse practitioners, doctors, and therapists, pulled out IVs and other tubes, including her trach a time, or ten. Willa finally got to “go to the zoo”, Cardinal Glennon’s term for going home, on April 19, 2018.

Since then, life has been anything but calm. Willa has had three week plus stays in the Transitional Care Unit (TCU) at Cardinal Glennon, countless appointments with Pulmonology, Neurology, Genetics, ENT, Gastroenterology, and Complex Care. The nurses and doctors know her by sight!

When Willa isn’t visiting Cardinal Glennon, she enjoys being a tiny tornado, like any two-year-old. She terrorizes her big sister, in-home nurses, mom, and dad, and destroys the house on the regular.

There is no cure for CCHS, but Willa’s family feels she has been fortunate to receive care from some of the best in St. Louis at Cardinal Glennon.

How CMN Funds Help Willa & Kids Like Her:

No kid likes to be in the hospital, but for Willa it’s important she has a place to play. Thanks for the funds raised by CMN-STL, Willa gets to enjoy countless hours in the patient play room while she is in-patient at Cardinal Glennon.

January 2023 Update:

Willa is rocking life as a 5-year old! She attends Pre-K and loves getting to ride the school bus with her big sister. She loves playing Sonic and is still our Dancing Queen! 

Medical Update: Willa is continuing to keep us on our toes and has recently added a few new specialties to her list of followers. As she gets older, we’re learning more about which automatic body functions aren’t automatic for her! We are so fortunate that the Complex Care Medical Program (CCMP) at Cardinal Glennon is following Willa and helping us to keep her healthy and out of the hospital! We’ll be visiting her “favorite place” (her words) at the end of February for her annual sleep study. We are currently living our lives as a typical family with two kiddos who are healthy and active.