Patient makes Children's home while waiting for heart transplant surgery

November 03, 2010

Seven-year-old Aubrey Reeves and her mother Cheryl have been living at Children's for the past five months, waiting for Aubrey's third heart transplant. Theirs was one of 17 patient stories shared in a series of on-air interviews conducted during the Children's Miracle Network Radiothon that took place in February at Children's.

In the time the pair has been at the hospital, they've found ways to make Children's feel like a home away from home. One of Aubrey's favorite afternoon activities is to draw chalk pictures of butterflies on the concrete of the courtyard at the hospital. In her patient room on the eighth floor, Aubrey has added a pink doorbell, finger paintings and inflatable Barbie furniture to make the space her own. The Reeves' philosophy for the room: "Everything in here is all about Aubrey." And she will remind you if you forget.

Born in Wichita Falls, Aubrey was believed healthy until at 14-months-old, she caught a cold and was taken to the doctor. Thirteen days and five doctors later, she was diagnosed as having Epstein's Anomaly, a heart valve problem causing backflow of blood, overworking the left ventricle which pumps blood to the body.

"The most painful part of our story is that if this problem had been discovered at birth, it could have been fixed. But by the time it was detected, the damage was irreversible," Reeves said. "The doctors gave me a prognosis of her maybe living until age 5, so we feel blessed to have made it this far."

At age 3, Aubrey received her first transplant. At her annual post-transplant checkup, everything appeared fine. But in the following months, Aubrey was in and out of the pediatric intensive care unit at Children's, culminating when she went into full cardiac arrest in the waiting room while sitting on her mother's lap watching Scooby Doo. Physicians worked almost 20 minutes on Aubrey before reviving and stabilizing her. A subsequent heart biopsy showed that rejection was imminent.

While staying at the Ronald McDonald House, waiting for a second transplant, Aubrey and her mother met a family whose daughter had been in a car wreck and was in critical condition in the Children's ICU. Their chance conversation revealed that the family's dying daughter might be the heart donor Aubrey needed to survive. When the daughter was confirmed as having no brain activity, doctors performed cross-testing to confirm the match.

"The morning scheduled for surgery, the child's parents came in and watched Aubrey playing. Then we got together and said a prayer over both little girls. They had to say goodbye to their daughter and wanted to be a part of where this precious little girl's heart was going," Reeves said.

Aubrey received a second transplant and was released a week later.

This time last year, Aubrey was at home in Wichita Falls, often wandering around the house carrying her favorite gift received at Children's, a tool chest, and using her toy hammer to tack drawings to the wall. The youngest child and only daughter in a family of six kids, she is a precocious tomboy when she's feeling well.

A Hollywood telling of Aubrey's story would conclude with this miraculous provision for a heart, but some happily-ever-after moments don't last. In December 2004, Aubrey showed signs of rejecting her second transplant and was readmitted to Children's.

"My first thought in the ICU was that another transplant was out of the question," Reeves said. "But heart transplant coordinator Susan Daneman told me that Aubrey still had a chance. Daneman explained that both rejected hearts had a common antigen that Aubrey's body had developed antibodies against, causing the rejections."

Reeves knows that it will take another miracle for Aubrey to get another heart. A highly specific, donor match is required to meet all the testing criteria. But the family hasn't lost hope.

"We are looking for the needle in the haystack. But look at her – some days you can't tell anything is wrong," Reeves said.

In the meantime, Aubrey's favorite escape is to go outside where she can best be herself. Sometimes she goes with a full entourage of her physical therapist, child life specialist and nurse following along behind her wheelchair.

"We take crackers and crush them up and feed the birds. Aubrey chases them, screaming and pushing her wheelchair toward them before they'll fly," Reeves said. "She takes her music with her, puts on her headphones and purple heart-shaped sunglasses. She looks like a movie star."