Looking at young Greer Underwood today, no one would never guess that a few months ago she was in a hospital in critical condition, on a waiting list for a new heart.
The 10-year-old Muscle Shoals, Ala., youngster might not be alive today had her parents not pushed to get a second opinion for her breathing problems that had been diagnosed as a simple sinus infection.
Now, looking back over the many medical trials Greer underwent in the past seven months -- a severe stroke, a final (correct) diagnosis of cardiomyopathy, the implantation of an experimental device to pump her heart and ultimately a full heart transplant -- her parents are thankful that the many odds stacked against their daughter turned in her favor.
"I think Greer is proof that God is still active and alive in our lives today," says Greer's mother, Dawn Underwood. "She's doing so great now, and she's just been superbrave through all of this. That is the personality the Lord gave her. ... I guess he knew she would have to go through so much."
Last February, however, Greer's prospects did not look so promising. Her overall weakness, dry cough and shortness of breath was first diagnosed as a simple sinus infection by her pediatrician, then pneumonia by a local hospital. But she wasn't responding to any of the treatments for these diagnoses, and was getting worse. Greer's parents brought her back to the hospital emergency room soon after she began vomiting.
"We told them it's not pneumonia and something has to be done," Underwood says. What started as relatively benign respiratory symptoms became nearly fatal three to four days later. Greer was then flown to Children's Hospital in Birmingham, where doctors saw that Greer needed a pediatric cardiology team, and transferred her to the University of Alabama at Birmingham hospital.
Within 10 minutes of arriving at UAB, Greer suffered a massive stroke.
Though Underwood says doctors didn't give the family "much hope of taking her home," Greer made steady progress. Doctors implanted an experimental heartware device called an LVAD -- a left ventricular assist device -- which allowed Greer to regain enough strength to qualify for a heart transplant.
"We knew transplant was the only option, but she wouldn't have survived to get the transplant without the LVAD," says Dr. F. Bennett Pearce, medical director of heart transplant at UAB and Greer's cardiologist. The device was still considered experimental for adults, but the UAB team believed Greer, who weighed 85 pounds, was large enough to support it. She was the first child in the U.S. to have ever been fitted for an LVAD.
Greer's prospects were touch and go for a few months, but on Mother's Day 2011, her family got the call: a transplant heart had become available.
Within a week of the transplant, Greer was back at home. She still has some speech difficulties and weakness on her right side from the stroke, for which she's receiving rehab, but is healing rapidly and has even re-enrolled in dance classes for the fall, her mother says.
Because cardiomyopathy -- and heart conditions in general -- are rare in children, they often masquerade as a benign respiratory illness and get misdiagnosed. They can manifest as weakness, difficulty in breathing, or vomiting, making them seem like pneumonia, asthma or a gastrointestinal condition, says Pearce, who says that most of his patients come to him after they've been misdiagnosed by their pediatricians.
A study of children who were treated for cardiomyopathy at Mount Sinai Medical Center in New York found that that they'd had an average of two to three misdiagnoses before their heart condition was correctly identified, says Dr. Barry Love, a pediatric cardiologist at Mount Sinai.
"It's a challenge with pediatric heart problems, because when a kid comes in with respiratory symptoms, it's infinitely more likely that they do have a respiratory problem, not a heart problem, but this means that kids usually don't get the right diagnoses until they are quite sick," Love says.
"The take-home message is that benign respiratory illness usually resolves itself after a while," Love says, "so if your child is not responding to treatment, then you need to investigate their illness further."
And luckily for Greer, that's what her parents did.