Delilah turns three years old with a new heart and writes hospital history.
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’s had in her young life.
Amazingly, Delilah sat up and played with her toys.
“She’s a rock star,” he said. “I don’t know how she does it.”
Ryan and Samantha, Delilah’s mother, said the memory is just one of many that demonstrate 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 flows to the heart and require treatment as soon as a child is born to survive.
Delilah spent much of the first year of her life in hospitals.
“We knew it was going to be a tough road,” Samantha said.
Waiting for a Heart in Chicago:
Earlier this year, Delilah’s doctors determined that her best chance for long-term survival would be a heart transplant. Hence, the family traveled from their Moline, Illinois, home to Ann & Robert H. Lurie Children’s Hospital of Chicago, the only pediatric hospital in Chicago. Illinois with an experienced and dedicated pediatric heart transplant program.
Lurie Children’s has been among the top three hospitals by volume for pediatric heart transplants since 2018. The three-year survival rate for patients receiving heart transplants at Lurie Children’s is 95 percent — higher than the national average.
“I was excited that she was going to be there for her care,” Samantha said. “It seemed like the best fit.”
In March, Delilah was admitted to Lurie Children’s Regenstein Cardiac Care Unit (CCU) and lived there while waiting for a heart to become available. Meanwhile, she received a ventricular assist device (VAD), or a pump, 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 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 and talk to her, she’s always in a good mood.”
To turn three and write history:
In October, after about seven months of waiting, the parents got the call they’d been waiting for: A heart was available for Delilah.
“All the emotions hit us at once,” Ryan said, acknowledging the heartache and sacrifice the donor’s relatives made to make the heart available.
On October 23, Delilah underwent the procedure. Her transplant made hospital history, going down as Lurie Children’s 400th pediatric heart transplant since the first in 1988. Heart Transplant Program Surgical Director Dr. Michael Mongé performed the 400th transplant with Dr. Sunjay Kaushal, Head of Cardiothoracic Surgery; pediatric heart surgeon Dr. Osama Eltayeb; and a team of more than 40 nurses, pediatric cardiologists, pediatric anesthesiologists, surgical technicians, and organ retrieval and transport specialists.
Now healed from her transplant, Delilah remains at the hospital, walks the hospital hallways with nurses and staff as much as possible, and enjoys her favorite pastime: listening and dancing to her favorite Disney and Kidz Bop songs.
Meanwhile, Delilah is approaching another special milestone: her third birthday, November 13th.
Although they agree that no gift could beat getting a new heart, her parents plan to throw her the most significant party possible in her hospital room.
“The hospital is going to pop,” Ryan said.