Hearing your child has collapsed while playing sports is a nightmare scenario for any parent.
After a Grand Rapids boy collapsed in cardiac arrest minutes into a basketball game at Forestview Middle School in Baxter last week, many parents were left wondering, “Could this happen to my child?”
For Brainerd resident Jamie Anderson, that question is in the back of her mind every day.
Six years ago, Anderson, now 27, took her 3-week-old son, Colton to the doctor for what she thought was just a cold. Colton was born with aspiration pneumonia and struggled for the first few weeks of his life.
“He was really sick,” Anderson recalled.
Colton’s doctor visit uncovered more than common cold symptoms. His pediatrician found a heart murmur, a fairly common diagnosis.
Colton underwent an echocardiogram to determine if there was anything more serious that needed to be addressed.
Just a few weeks after his birth, Colton was diagnosed with aortic coarctation — a narrowing of the aorta. Anderson said after Colton’s diagnosis she did some research of her own to find out what to expect for Colton’s future.
“I was a worry wort,” she said. In her internet searching, Anderson found that the life expectancy of someone with aortic coarctation is somewhere around 35 years of age. “I about couldn’t breath,” she said.
Colton, now 6, had surgery at six-weeks-old to dilate his tiny aorta.
“That was the scariest week of my life,” Anderson said.
Anderson said Colton now lives with a lot of restrictions. He visits Children’s Hospital in Minneapolis for check-ups twice a year. He can’t play football, a sport he loves more than anything. He will never be a firefighter. He won’t be able to serve in the military and he will be on medication to stabilize his blood pressure for the rest of his life.
Anderson said she tries not to worry for Colton’s sake, but she does. She said she often thinks about what would have happened if she hadn’t taken Colton to the doctor when he was a baby or what would have happened if the murmur went undetected. “I’m glad I worry — he could have been one of those kids,” she said. “I still worry that I’m going to get a phone call.”
Colton is the oldest of Anderson’s four children. Despite Colton’s condition, doctors do not have the same concern for Anderson’s younger children who have a different father than Colton. “They don’t have the same risk,” she said.
Anderson said her hope is to see cardiac screening to better detect potential problems and possibly prevent a life-shattering incident like the loss of the middle school basketball player who was later identified as 12-year-old Breck Liestman.
It is unknown whether Liestman had pre-existing cardiac condition and an autopsy is still pending.
“Maybe if they caught it when (Liestman) was born they could have dealt with it right away,” Anderson said. “If I didn’t bring (Colton) in, I don’t know what would have happened — if he would have gotten really sick? I just don’t know,” she said.
What are the odds?
Some may find comfort in knowing that the odds of sudden cardiac death in a child involved in competitive sports is extremely rare — about 1 in 200,000.
“It doesn’t happen often, but it’s hard to tell that to the one person it happens to,” said pediatric physician, Dr. Troy Couture of Essentia Health-St. Joseph’s Medical Center in Brainerd.
There are about 350,000 sudden cardiac deaths in adults each year.
“It’s rare (in children), but when it happens it is devastating,” added Dr. Mark Johnson, a cardiac specialist with Essentia.
When it comes to screening infants and children for cardiac conditions, Johnson said increasing screening wouldn’t make a marked difference in the number of incident.
“You would have to screen 199,000 to find potentially one child with a problem,” Johnson said. “And that’s the problem with trying to screen before — it’s a very rare.”
The American Heart Association does not currently recommend cardiac screening in children.
Screening involves either a echocardiagram or an electrocardiogram (EKG), studies recommended only in cases where a child has failed a physical exam or has caused their pediatrician to request a study to look further. Johnson said conducting such studies on everyone would result in a certain number of abnormal echoes even if they have a healthy heart.
“It’s difficult to discern that,” Johnson said. “It’s not as easy to as it sounds to determine a false positive.”
Johnson said the presence of abnormal tests is especially true in athletes. “If you look at echoes and EKGs in Olympic athletes, their results are almost always abnormal,” he said. “Their hearts are so powerful and so strong — they’re abnormal. That’s why we really depend on history and physical exam.”
Johnson said a child like Colton is a prime example of someone who would need to undergo further testing, adding that 80 percent of people who die suddenly, die of a heart issue, but of those only 25 percent have a known heart issue.
“The other 75 percent have some unrecognized cause,” he said. “And that gets a bit complicated.”
Johnson said causes could include many issues including from a murmur, an extra hole in the heart, a thickening of the heart muscles, or an aortic rupture, all of which can be divided into two categories. In layman’s terms, the issues are either plumbing or electrical.
“You can have a kid with a perfectly structurally sound heart that has an electrical problem,” he said. Johnson said he is unaware of available data showing the number of patients with an electrical cardiac issue that would have an abnormal EKG.
Couture said the most important thing a parent can do to prevent a tragic cardiac incident in their child is to keep up on regular physical exams and maintain an accurate and update history of any major health concerns.
“We really depend on that,” Couture said.
Couture added that students are required to have a physical prior to clearance to play school sports in seventh grade. In addition to a physical exam the doctor discusses family history, including a family member who suffered sudden cardiac death or a presence of heart disease in relatives under the age of 50.
Johnson said there are things children can do to themselves that can increase the chances of a sudden cardiac issue. Among those most concerning to Johnson, are the use of energy drinks.
“I’ve not seen somebody die from that, but I’ve seen some pretty serious rhythm issues,” he said. “They’re not without potential side effects.”
While it was not the case in Liestman, Johnson said blunt trauma to the chest at the exact right time in the heart cycle can be catastrophic.
Johnson and Couture agreed the key to survival is access to an Automated External Defibrillator (AED) device. “Getting that device and putting it to use is what saves lives,” Johnson said.
Johnson said children who have a shorter window of intervention or who collapse with a sudden cardiac issue, the survival rate is roughly 2 percent.
“You can do adequate CPR on these young kids, but they need this device and to be shocked — as soon as they can,” Johnson said. “Not that CPR isn’t important, but the AED is the key to survival.”
“Know where the AED is, know how to use it, know how to do CPR,” Couture said. Couture said Essentia offers AED and CPR training and has placed more than 70 AED devices throughout the area through St. Joe’s foundation.
While the device does put off an electric shock, Couture said it is simple to use and won’t actually shock a victim unless they need it.
In 2014, Minnesota law will require school districts to provide AED and CPR training as part of curriculum for seventh through 12th grade students as a graduation requirement.
Couture said the number of cases of sudden cardiac death in young athletes has remained steady.
“I think we just hear about it more often,” Couture said as high profile cases tend to bring it to the limelight.
“This has been happening forever,” Johnson said, noting that cardiac arrest can occur during physical activity or immediately after. “It can happen at anytime.”
Couture said it’s important for parents to know keep track of personal history issues that could point towards a problem — passing out, easy fatigue, chest pain with exercise.
Couture said these issues speak to the value of having a primary care physician. While children aren’t required to have a sports exam until they reach junior high, cardiac issues can show up much sooner.
“It’s important to get checked out,” he said. “If you’re never coming in, and don’t know your family history, you could sneak by with out it ever being discovered.”
SARAH NELSON KATZENBERGER may be reached at email@example.com or 855-5879.