When Kristin and Brenden Etue welcomed their daughter Livi into the world in March 2017, their lives were changed forever. Born with a genetic condition that affects multiple parts of the body known as CHARGE syndrome, Livi required extensive medical procedures at Ann & Robert H. Lurie Children’s Hospital of Chicago that has already included two open heart surgeries, sedated hearing and vision tests, an abdomen surgery and an open-chest surgery when she was just 10 days old. Kristin and Brenden had to take on the all-consuming responsibility of coordinating and managing her care between the various specialists and services their daughter needed both in the hospital and while at home.
Now, as they celebrate Livi’s first birthday, the Etues and Livi’s grandparents, Will and Kim Ulaszek,are launching the Little Heroes League, a nonprofit organization committed to supporting medically complex children and their families by funding a new program at Lurie Children’s that initially includes several new nurse coordinators and social worker positions to provide the highly coordinated care babies like Livi require. They are donating the first installment of their initial $1 million commitment in a check presentation event.
During a prenatal ultrasound, Kristin and Brenden learned their daughter had two defects in her heart, as well as a cleft lip and possibly a cleft palate. Doctors also suggested it was possible that her skull was malformed and she might have a genetic disorder causing her birth defects that went undected by prenatal testing.
When Livi was born two weeks later, she was brought to the Neonatal Intensive Care Unit (NICU) at Lurie Children’s, where she began undergoing testing. “We were meeting with every specialist under the sun, trying to figure out what was going on,” Brenden said. “We advocated for Livi to have a hearing test and found out she was profoundly deaf. A vision test showed that, at best, she would have peripheral vision in her right eye. On top of it, we found out she may need a tracheostomy and had slight to moderate laryngomalacia (soft tissue above the vocal cords that fall into the airway when the child breathes in).
Soon, the Etues learned Livi’s official diagnosis: CHARGE syndrome, a genetic disorder that can affect multiple parts of the body, including the eyes, heart, genitals, ears, nasal passage and overall growth. Just as soon as they celebrated Livi’s birth, Kristin and Brenden transitioned into their new roles as caregivers for a medically complex child.
At just 10 days old, Livi had open-chest surgery, the first of several heart surgeries she would require throughout infancy and childhood. She went home about four weeks after the operation, where Kristin said she thrived. “She was just like a normal baby and gained a ton of weight. We were coordinating therapies, giving her medicine throughout the day, managing her feeds through her NG tube and tracking supplies coming to the house. I was on the phone every day with Early Intervention trying to get them to come to the house. We were also coordinating Livi’s appointments at Lurie Children’s.”
On March 27, 2018—Livi’s first birthday—the Etues and Ulaszeks launched the Little Heroes League, a 501c3 organization in support of medically complex children and their families. With an initial commitment of $1 million, Little Heroes League will fund a new first-in-the country program at Lurie Children’s NICU that initially includes several new nurse coordinators and social worker positions. These positions will help support patients and families by coordinating care for patients with the goal of providing the best possible health outcomes for children who are born with lifelong, complex conditions.
Even though care coordination was critical to Livi’s initial diagnosis and necessary follow-up care, such services are not covered by insurance companies for newborn infants. Insurance companies fund care coordination only when claims data is available, which can take up to six months to generate, said Chris Haen, Executive Director of the Care Coordination Entity at Lurie Children’s. “By the time insurance systems identify a patient for care coordination, they’re usually over a year old,” he said.
Kristin and Brenden know all too well from their experience that this timing does not work for parents. “The time when you really need care coordination is at the very beginning when you’re overwhelmed immediately following the birth of a special needs child, don’t yet know how to navigate the complex medical system, and just want to focus on being a parent to your child,” Kristin said. “Our goal is to give parents of medically complex kids the support they need to focus on being parents, not clinicians. Care coordination can bridge that gap.”
There is an extra advantage to the type of positions Little Heroes League will fund over traditional case management services that insurance companies provide. “The type of care coordination we provide being face to face and through the hospital is much more helpful to families compared to a case manager from the insurance company trying to help a family over the phone with no connection to the hospital,” Haen said. “If we can show this program can reduce the costs of healthcare and improve the outcomes for these children, it could help change healthcare policy and persuade insurance companies to pay for these services.”
How You Can Help
To learn more about how you can support the Little Heroes League and Lurie Children’s, please visit https://www.littleheroesleague.org/.