Six-year-old Luke Heflin can find a way to have fun even when his energy is running low.
The boy knew he had a chance for mischief as soon as the nurse walked into his hospital room to check on the health monitor.
As she removed the old batteries, he grabbed his neck and chest and pretended to be in trouble.
When the nurse slid fresh batteries into place, he stopped the drama, gave her a smile and said “Ah, that’s much better.”
The little ham got away with it.
“He has the nurses wrapped around his finger,” joked Rebecca Heflin, recalling how well her son can brighten up the intensive care ward of the Children’s Hospital of Philadelphia.
The Carlisle area woman remembers sitting down with Luke and explaining his need for a heart and lung transplant in terms a child could understand.
“They will take out the old parts and put in new parts… just like Mr. Potatohead,” she told Luke.
Yet, Heflin has to be careful not to talk down to her son. Trust and honesty must be there for what could be a long wait stuck on the donor list.
The long wait
“It could be a month… It could be a year,” she said last week. “It’s tough knowing someone else’s child has to die if Luke is going to thrive.”
His chances are better than most critically ill patients waiting for donor organs. In Pennsylvania, Luke Heflin has no competition for the size and volume of the replacement organs he needs to survive long term. But even when a heart and lungs become available, the organs have to match up.
“Things have to be just right,” Heflin said. “The doctors would have to do their screening.”
It’s hard enough for families of adults to decide whether to donate the organs of the deceased. She can only imagine what it would be like if and when other parents have to make that difficult choice to save her son.
Meanwhile, Rebecca Heflin uses gentle persuasion to get Luke to take his pills everyday on schedule even when he feels yucky. Once her son has donor organs, he would have to take anti-rejection medication the rest of his life. A single lapse could ruin his chances for survival.
“He needs to form the good habits now,” said Heflin, explaining how Luke takes 10 pills daily and receives two syringes every morning.
Halfway through her pregnancy, Heflin was told something was very wrong with her baby boy. An ultrasound revealed her child had flip-flopped organs, a condition known as heterotaxy. The worst part was his heart was severely deformed.
Determined to fight for their baby’s life, Rebecca and her ex-husband Chad read everything they could about his condition, made regular trips to a cardiologist in Philadelphia and planned for surgery in case the baby survived. From day one, Luke proved to be a “miracle baby” who continues to beat the odds despite a series of operations, tests, procedures and setbacks.
Luke was born at the Children’s Hospital of Philadelphia Aug. 11, 2003 with an unnaturally small lung artery that did not properly connect to his heart. It would have required immediate surgery, but Luke’s body had formed extra blood vessels in his heart to do some of the work for the defective artery.
When Luke was 18 months old, doctors performed open heart surgery to correct the problem without having to resort to a transplant. That procedure worked better than what the doctors had expected, Heflin said. “It actually held him over until now. Luke was off most of his medication and was doing very well until last fall.”
His condition became so critical, Luke could not move around without turning blue due to lack of oxygen in his blood. He was admitted to the children’s hospital in March and has been waiting ever since for a new heart and lungs.
Kathy Malloy of North Middleton Township is Luke’s grandmother. “We knew that eventually this would come upon us,” Malloy said. “We knew Luke would have a downfall. It’s heartbreaking, but he just keeps on bouncing back. I believe God is watching over him and taking care of him.”
Smaller than other children his age, Luke cannot run or ride a bicycle and some medications limit his ability to play outdoors. The boy could have easily slipped into depression or bitterness over his circumstances.
Making a positive
Given all Luke has been through, Rebecca Heflin is amazed by his spirit. “He makes a positive out of everything,” she said. “He keeps everybody laughing. He’s very jovial and quick with a joke. There’s no reason why, as adults, we could not do the same.”
Malloy is not sure Luke understands everything about what is going on. Malloy is proud of how her grandson can adjust to his situation even as she struggles with kidney disease and blindness brought on by diabetes.
“We do not sit around in doom and gloom,” Malloy said. “We keep on praying that Luke is going to be OK.”
From the start, people tried to convince Rebecca to terminate her pregnancy. Looking back, she is thankful not to have taken the easy way out and instead rely on her faith in God to see her through the challenges.
“Everything happens for a reason,” Heflin said. “I’ve seen some good come of it. I’ve seen people look at Luke in amazement. My son has touched lives.”
The past few months have been difficult for the family. Rebecca Heflin is on family leave from her job at Target in Carlisle and spends most of her week in Philadelphia watching over her son. While in Philadelphia, Rebecca Heflin stays at a local Ronald McDonald House for families of hospitalized children.
On the weekends, the mother returns to the Carlisle area to be with her 10-year-old daughter Rose, who stays with relatives during the week. The hard part for mother and daughter is that separation.
“Rose just adores Luke,” Rebecca Heflin said. “Nobody can pick on him with her around. The night before he left for the hospital, she wheeled him around the neighborhood on her new bike and spent a lot of extra time with him.”
The situation has created a financial strain on the family. The Target store has helped with its workplace relief fund while Great Hope Baptist Church in North Middleton Township has taken up a collection for the Heflin family, who are members of the congregation.
“We’re praying for them,” Pastor Dale Barrick said. “We are all greatly concerned and anxious about what may take place next.”
Rebecca Heflin is grateful for all the help. Hospital staff, meanwhile, keep Luke busy with gym class, physical therapy, art and music therapy and an hour of school work most every day.
“He’s a pretty busy boy,” Rebecca Heflin said. “He doesn’t let anything get him down.”