Less than a year after her 12-year-old daughter collapsed on the soccer field and died, a Tucson mother has taken an unprecedented step in preventing sudden cardiac death in other children.
Jenine Dalrymple was an accountant, mother and community volunteer before her eldest daughter Andra's death from a silent heart disease.
Now she's an advocate for better awareness of cardiac health among kids and parents.
Mandating heart screenings for young people remains controversial because many experts believe the U.S. lacks the medical personnel to handle such a task. The American Heart Association recommends a thorough history and physical exam every two years rather than mass screenings. Sudden cardiac death is rare and the common screening method for it still results in many false positives.
But both medical experts and advocates like Dalrymple say more needs to be done to detect the most common hidden heart problems that kill children and young adults in the U.S. every year - hypertrophic cardiomyopathy, long QT syndrome and Wolff-Parkinson-White syndrome.
Among other things, there is no database of children and teens who die of sudden cardiac arrest every year, making it more difficult for advocates to make their case.
Earlier this month, Dalrymple coordinated the first-ever comprehensive local heart screening for children. Electrocardiogram (ECG/EKG) machines were set up at Flowing Wells Junior High School, the school that Andra attended, and 450 children underwent voluntary testing. The Northwest Fire District, the Flowing Wells Unified School District and Diamond Children's Medical Center all donated personnel to Dalrymple's Andra Heart Project.
Eight percent of the kids showed abnormalities and were referred for further screening.
"The nice thing about pilot projects like Andra Heart is that we're trying to see how feasible it is to do it," said Dr. Santiago O. Valdés, a pediatric cardiologist at Diamond Children's Medical Center. "If you try to screen all young athletes, for example, one of the concerns is who is going to see those 6 to 10 percent who have positive EKGs. Right now in the U.S., we don't have the infrastructure to see all those patients."
A spate of sudden cardiac deaths among young athletes that made the national news this past spring spurred Dalrymple into action in the midst of paralyzing grief.
"Andra had not been feeling well during soccer. She was dizzy and tired, and it never crossed my mind it was a heart problem. In the long term, this is about getting knowledge out there," Dalrymple said.
An EKG measures electrical properties in the heart, giving a reading of its rhythm. It is often used as a screen for enlargement or other abnormalities of the heart, but not just anyone can read the test with good results.
"You need a pediatric cardiologist for the kids. There are a lot of differences - things that would be considered abnormal in adults are normal in kids," Valdés said. "There's differences in how you interpret the EKG in different age groups."
After the initial two days of testing at Flowing Wells Junior High, Valdés and colleague Dr. Scott Klewer held a clinic at Diamond Children's Medical Center on Aug. 20. Children who had a positive EKG underwent echocardiogram testing. While the EKG measures electrical activity in the heart, the echocardiogram is a more intense test, an ultrasound that allows a closer look at the heart itself. After the clinic, three children were referred to cardiologists for more specialized care, Valdés said.
"With EKGs, a lot can be false positives, so you don't want to create too much anxiety with the parents. So that's why we wanted a quick turnaround with the clinic," Valdés said. "An echocardiogram is a much more definitive test, but it's much more expensive so you can't do it as a screening."
One of the most common conditions pediatric cardiologists look for when screening for sudden cardiac death is hypertrophic cardiomyopathy, an abnormal thickness of the heart muscle that occurs in one of every 500 people. If the condition is detected, the treatment is typically medication combined with a restriction on strenuous exercise. Some patients with hypertrophic cardiomyopathy also need a defibrillator.
Another heart condition that can result in unexpected tragedy is long QT syndrome, which affects one in every 2,500 to 3,000 people and is the condition blamed for Andra Dalrymple's death. A patient diagnosed with long QT will typically take beta blockers and must restrict his or her activity level.
Some patients have episodes of passing out. For others, the first sign of the disease is a patient's sudden death. A third condition Valdés and Klewer were watching for at the clinic is an abnormal electrical connection in the heart called Wolff-Parkinson-White syndrome, which affects about one in 1,500 people.
"Not everyone who has one of those three conditions will die from it suddenly," Valdés stressed.
A recent study published in Circulation: The Journal of the American Heart Association found that one out of every 44,000 NCAA athletes dies suddenly from cardiac arrest - higher than many other estimates for young athletes. The new study used news reports, insurance claims and data from the NCAA, the governing body for intercollegiate sports in the U.S.
Dalrymple is particularly concerned about young athletes and sudden cardiac death, since athletic training can increase the risk of sudden death in people with hidden heart disease. Her own wiry, energetic daughter was an avid athlete.
The day she collapsed, Andra tried out for the soccer team at Flowing Wells Junior High School, where she was in seventh grade. When she got off the field, she said she was dizzy. Her coach helped her to her mother's car, but shortly after the young girl went into cardiac arrest. Paramedics were able to revive her at the scene, but she died two days later at Diamond Children's Medical Center.
"When we got to the hospital that night, you could have pushed me over with a feather if you told me she wouldn't make it," said Dalrymple, whose family also includes her husband, Phil, and 11-year-old daughter, Grace. "Everything pointed to her making it."
Dalrymple said she felt like she had to do more to raise awareness of cardiac health, both for herself and to give the parents of Andra's classmates some peace of mind.
"The hard part is that I should feel better. But it doesn't make me feel better the way you would think it would. It doesn't bring her back," Dalrymple said. "I think in the next couple of weeks we're just going to evaluate what happened with the first screening. There's more we can do."
Valdés, the pediatric cardiologist, says Dalrymple has already made a significant contribution to young people in Tucson.
"We're not at the point yet where we can say everyone should get an EKG. But this is a good program to have to study, to look at the most cost-effective way to do this," he said. "It's a good step in finding out how to pick up the most patients, and it's even better because she was able to get the community involved."
On StarNet: Stephanie Innes brings you the latest health information in her blog, Tucson Health and Wellness, at go.azstarnet.com/health
How to help
Donations to a heart-screening program for young Tucsonans should be made payable to UMC Foundation/Andra Dalrymple Fund and mailed to UMC Foundation, 655 E. River Road, Building 2, Tucson, AZ 85704. For questions, call 694-6088.
Preventing sudden cardiac death in children and teens
• Know your family history - most conditions that cause sudden cardiac death run in families.
• Passing out during exercise is a serious concern that should be checked out.
• Chest pain is common in children, and 99 percent of the time it's something other than heart trouble. But chest pain that happens only when the child exercises and every time he or she exercises could be a sign of something more serious.
• Watch for a child who complains of dizziness every time he or she exercises and the problem can't be blamed on dehydration.
• A child with recurrent palpitations - a sudden onset of a racing heart - should get further screening.
SOURCE: Dr. Santiago O. Valdés, pediatric cardiologist at the Diamond Children's Medical Center in Tucson
Contact Star reporter Stephanie Innes at 574-4134 or email@example.com