A beating heart. It's the first sound expectant parents hear of their child before birth. Ba-bum. Ba-bum.

As the child grows, the doctor magnifies the sound through the cold end of a stethoscope.

Ba-bum. Ba-bum.

The heart grows stronger as the child plays and becomes a teenager.

Sometimes, unexpectedly, the heart stops, and it can happen to a teenager.

Sudden cardiac arrest outside of a hospital happens to about 163,200 people in the United States each year, according to statistics from the American Heart Association. Anywhere from 2,000 to 14,000 of the reported cases of sudden cardiac arrest happen in people under 18. The number of cases of sudden cardiac arrest varies because of reporting methods.

Shannon Huber, of Beulah, died in his sleep. His heart stopped. He was 17 years old. He died of sudden cardiac arrest.

He died March 25, 1999. It took almost a year before his parents discovered it was long Q-T syndrome that caused the cardiac arrest. The hereditary disorder affects the electrical rhythm of the heart.

"He was the laughter," said Michelle Tipton, Shannon's mother. "He was the joker, always teasing, full of ambition and love. It got real quiet in the house when he was gone."

Long Q-T syndrome is one of the causes of sudden cardiac arrest in young people.

Shannon's parents became members of a small but growing group of families who have lost a child to sudden cardiac arrest. Some families joined up on the Internet to share their stories and educate others about sudden cardiac arrest. The organization is Parent Heart Watch.

Each parent involved in the group has a different cause. Some want to pass legislation to require automatic electronic defibrillators in schools. Other parents want to train people how to use the devices.

Tipton falls in the latter category. She operates Straight From the Heart, an AED training service.

An AED weighs about 5 pounds and is about the size of a coffee maker. If used on a person who is in cardiac arrest, it increases the chance of survival by 70 percent if used within the first 10 minutes, Tipton said.

"Even if you just used an AED, you need to call 911, because something is wrong," she said.

Tipton also is creating a database of schools in North Dakota that have AEDs. So far, 40 of 204 school districts have AEDs, she said. Beulah High School, the school her son attended, now has one.

In the Bismarck-Mandan area, two high schools will have AEDs available to use within the next one to two months. St. Mary Central High School has an AED, but it will not be in use for about a month pending staff training. Century High School is getting an AED and expects to have it this summer.

"We don't have highly populated schools," she said. "We hope they choose to buy and want it."

Funding is one reason she doesn't want legislation requiring every school to have an AED. Some states have gone this route, with parents like Tipton pushing for it. TIpton has two reasons for not wanting AEDs legislated in schools: it tells districts where to spend their money, and if it's forced on a district, she feels people are less likely to learn how to use it. One AED costs less than $2,000, depending on the model.

"It would cost $10,000 for a funeral," she said.

Bishop Ryan High School in Minot did not have an AED a year ago. Today, it has three. One of the three stays by the track when the track team practices or has a meet.

Most of the teens shown on the Parent Heart Watch Web site participated in sports. The most common cause of sudden cardiac arrest in teen athletes is commotio cordis, which is not a heart defect. Commotio cordis is a blow to the chest and accounts for 36 percent of sudden cardiac deaths in teen athletes, according to the American Heart Association.

Sometimes an athlete dies without explanation. Carla and Bob Crockett, of Minot, are still waiting for an explanation on why their 15-year-old son Andrew died April 7, 2005.

The Bishop Ryan student had just finished running a lap around the track with another student during track practice. Both students put their hands on their knees to catch their breath, but then Andrew fell over, his mother Carla Crockett said.

That's what she was told happened the day her son died. He was given CPR, and a defibrillator would be used when the ambulance came, but it would be too late. She would lose her silly, bright boy to cardiac arrhythmia, something she never thought would happen to her child.

"It was pretty shocking," Crockett said.

She didn't know anything about sudden cardiac arrest, and didn't know it could happen to young people, she said.

She and her husband Bob found support through Parent Heart Watch. She found out about it from a woman in Minnesota. She talked with the woman every week. This woman had lost her own son two weeks before Crockett lost Andrew. The Crocketts attended a convention earlier this year in Las Vegas to meet other families who had lost children to sudden cardiac arrest.

"We look at (Parent Heart Watch) as a support network," Crockett said. "There is more healing to be done."

When they are ready, they want to work to get AEDs in schools. She wants it on a voluntary basis, although legislation could be a possibility in the future, she said.

She wants training to be a part of that as well. She knows training can work because of what she's seen at Bishop Ryan. In addition to the three AEDs, the track coaches and students are trained in CPR and how to use the AED.

"I don't want it to happen to anyone else," she said.

She wants awareness of possible symptoms of heart conditions. Dizziness, passing out or a racing heart could point to an underlying heart condition, she said. If a child has these symptoms, she recommends they see a pediatric cardiologist.

"They may not be symptoms or attributable," to heart disease, she said.

Taking a proactive approach keeps it from being misdiagnosed or missed, she said.

Andrew did not have any symptoms of heart disease or defects. He played three sports a year and was one of the healthier family members, she said. They do not know the cause of Andrew's death. They have a blood tissue sample being tested, but results could take two to four years and could come back inconclusive. The family has been tested for heart disease, and found no problems. The American Heart Association recommends screenings for cardiovascular abnormalities for high school athletes as part of the pre-participation process.

Crockett is divided on adding heart screenings to sports physicals. It's costly, and doesn't always detect if there is a problem, she said.

No doctor visits ever picked up on Shannon Huber's heart disorder. Michelle Tipton didn't know she and her other son, Dustin, had long Q-T syndrome, until after Shannon's death.

"We would have never found out," Tipton said. "Things just kept happening (until) we ended up at Mayo and they diagnosed us."

Dustin, Shannon's younger brother, and Tipton have implantable defibrillators.

In the seven years since Shannon's death, Tipton continues to advocate for awareness of sudden cardiac arrest in teens.

"No one's keeping track of the numbers," Tipton said. "Kids die of cardiac arrest. You look at the individual causes and it suggests it is rare, but if you lump it together, it is not rare."

For more information about Parent Heart Watch, visit www.parentheartwatch.org. It provides a link to families who have children who have died of sudden cardiac arrest and other resources.

(Reach reporter Sara Kincaid at 250-8251 or sara.kincaid@;bismarcktribune.com.)