Ryan will never forget the moment he walked into his two-year-old daughter’s hospital room just hours after one of the nine open-heart surgeries she has had in her young life.
Incredibly, Delilah was sitting up, playing with her toys.
“She’s a rock star,” he said. “I don’t know how she does it.”
Ryan and Samantha, Delilah’s mom, said the memory is just one of many that demonstrates their little girl’s resilience and strength.
Before she was born, Delilah was diagnosed with two congenital heart conditions: hypoplastic left heart syndrome and double outlet right ventricle. Both disorders affect how blood flow to the heart and require treatment as soon as a child is born for survival.
Delilah spent much of the first year of her life in hospitals.
“We knew it was going to be a rough road,” Samantha said.
Earlier this year, Delilah’s doctors determined the best chance for her long-term survival would be a heart transplant, so the family traveled from their Moline, Illinois, home to Ann & Robert H. Lurie Children’s Hospital of Chicago, the only pediatric hospital in Illinois with an experienced and dedicated Pediatric Heart Transplant Program.
Lurie Children’s has been in the top three hospitals by volume for pediatric heart transplants since 2018, and the three-year survival rate for patients who have heart transplants at Lurie Children’s is 95 percent – higher than the national average.
“I was really excited she would get to be there for her care,” Samantha said. “It seemed like the best fit.”
In March, Delilah became an inpatient at Lurie Children’s Regenstein Cardiac Care Unit (CCU), living there while awaiting a heart to become available for her. In the meantime, she received a ventricular assist device (VAD), or a pump used to support heart function and blood flow for patients like Delilah who need a new heart.
Her parents visited Delilah as much as possible while working full-time and caring for their 7- and 9-year-old boys in Moline – about a three-hour trip to the Lurie Children’s downtown Chicago location. Being separated from her remains an emotional challenge, they said, but they take great comfort in the care she receives from the CCU staff, especially her beloved nurses.
“They make her feel really at home. They go above and beyond to make her feel comfortable and ensure she’s not scared or alone,” Samantha said. “You can see the smile on her face every time we call. Every time we go there, every time we talk to her, she’s always in a great mood."
In October, after about seven months of waiting, the parents got the call they’ve been waiting for: a heart was available for Delilah.
“Every emotion hit us at once,” Ryan said, acknowledging the heartache and sacrifice relatives of the donor made for the heart to become available.
On Oct. 23, Delilah underwent the procedure. Her transplant made hospital history, going down as Lurie Children’s 400th pediatric heart transplant since the first one in 1988. Heart Transplant Program Surgical Director Dr. Michael Mongé performed the 400th transplant, along with Dr. Sunjay Kaushal, Division Head of Cardiovascular-Thoracic Surgery; pediatric heart surgeon Dr. Osama Eltayeb; and a team of more than 40 nurses, pediatric cardiologists, pediatric anesthesiologists, surgical technicians and organ procurement and transport specialists.
Now healing from her transplant, Delilah remains in the hospital, taking walks with nurses and staff as much as possible in hospital hallways and enjoying her favorite pastime: listening and dancing to her favorite Disney and Kidz Bop songs.
Meanwhile, Delilah has another special milestone approaching: her third birthday, on Nov. 13.
Though they agree no gift could top getting a new heart, her parents plan to throw her the biggest party possible in her hospital room.
“The hospital’s going to be jumping,” Ryan said.