"Molly, the doctors have tried to fix your heart, but they couldn't fix it completely. So they're looking for a new heart for you."
That’s how 6-year-old Molly Brown’s parents, Shannon and Brad, explained to her that, despite undergoing five surgeries at a hospital in downstate Peoria to repair a congenital heart condition, she needed to come to Lurie Children’s in Chicago for a heart transplant. Shannon says Molly took the news in stride.
"So far, she hasn't asked too many questions about it like, 'How will they find my new heart?' When she has more questions, we'll deal with them."
Each year an average of 15 children and adolescents undergo heart transplants at Lurie Children's, where the Pediatric Heart Failure and Heart Transplantation Program is the only one of its type in Illinois, and the second largest in the U.S.
Molly has been a resident in the hospital's Regenstein Cardiac Care Unit (CCU) since late September while she and her family wait for a donor heart. Shannon spends virtually every night in Molly's room, while Brad joins them on weekends, making the two-hour drive from their home in downstate Fairbury. Every other weekend Molly's brothers – Blake, 8, and Derek, 9 months – join Brad to visit their sister.
"It really is a team effort, and we have an awesome support group back home," says Shannon, who adds that both her parents and Brad's are frequent visitors to the CCU.
Molly was born with hypoplastic left heart syndrome, a condition in which the left side of the heart is underdeveloped. It is fatal if not surgically treated in early infancy. The standard treatment is a series of three corrective surgeries, culminating with the Fontan procedure.
In Peoria, Molly underwent all three surgeries – the first at one week of age, the second at three months and the third at age 3. She also had surgery to repair a leaky tricuspid valve and a procedure to implant a pacemaker. Along the way, Molly developed a complication that caused her body to lose proteins and retain fluids, which can impact heart function, and required medication to treat.
Still, Molly's heart continued to fail, and in late September of 2017, her surgeon told her parents that their daughter's best hope was a heart transplant, and the best place for it was Lurie Children's. The hospital is ranked 3rd in the nation for pediatric cardiology and heart surgery by U.S.News & World Report. Within days, Molly was transported to Lurie Children's CCU.
"We knew since last summer that a transplant might be a possibility," says Shannon. "We thought the pacemaker would buy us more time. But I think we both fairly quickly began to feel at peace about the way things would need to be and the path Molly needed to take to get better."
Shannon says Molly's days go by surprisingly fast, thanks to programs provided by the hospital's Department of Family Services, which are funded exclusively by philanthropy.
Each day Molly has morning and afternoon activities at her bedside, including daily tutoring by members of the School Services team and sessions with music and art therapists. Her child life specialist plays Pictionary with Molly and, when needed, provides distractions during uncomfortable procedures. Once a week, Molly visits the Family Life Center on the 12th Floor to play "Body Parts Bingo," which is also broadcast to patient rooms by the hospital's closed-circuit Skylight TV channel. Other Family Services specialists include social workers, interpreters and non-denominational chaplains, as well as hospital volunteers. Sometimes Rainbow Therapy Dogs visit to provide some furry comfort.
"Family Services is so important," says Shannon. "If Molly didn't have so many activities to make her day go quicker, it would be easy for her to get down, which might impact her well-being. She keeps very busy, and loves to walk around the unit and chat with her doctors and nurses. She has fun, and if she's happy it's easier for us to be happy and to remain positive while we wait for her new heart."