Don't Be Afraid to Ask for a Heart Screening

Today, I read another story about a high-school athlete who dropped dead during practice from an undiagnosed, undetected congenital heart defect. The 17-year-old was at lacrosse practice. The very sport my high-school-athlete son plays.

I am relieved to know now that my son Martin has a healthy heart. Earlier this year, I finally asked our pediatrician to screen him for congenital heart disease (CHD). I had let the question nag me since 2005, when my younger son William was diagnosed with Scimitar Syndrome. Martin was screened in March, after I read news stories about five student athletes who collapsed and died while playing their sport.

I'm so sad for Daniel Valenson's family. They had no way of knowing. The heart defect he had (anomalous left coronary artery from the pulmonary artery) is very rare -- affecting 1 in 50,000 to 1 in 300,000 live births -- and often, the first symptom or sign of trouble is sudden cardiac death.

While Daniel's particular heart defect is very rare, congenital heart defects are not rare. They are frighteningly common, and yet, our children are not routinely screened for them at birth or as a requirement to play organized sports, although there are efforts to change this. In Chicago, for example, privately funded screenings have saved the lives of area athletes.

Congenital heart defects strike an average of 1 in 100 babies. Heart defects are THE MOST COMMON of ALL birth defects. More common than the ones you hear so much about -- and many of which women are routinely screened for during pregnancy -- such as spina bifida, Down syndrome, cleft lip and palate, and abnormal extremities.

Congenital heart disease affects about 35,000 children each year in the United States. Of those, about 3,500 die before their first birthday. Nearly twice as many children die from CHDs in the United States each year as from all forms of childhood cancers combined.

Don't be afraid to ask your pediatrician or family physician for your newborn, infant, toddler, young child or your student athlete to be screened for congenital (or acquired) heart disease. 

While any physician may be able to identify a congenital heart defect, the most qualified and specially trained physicians in this area are those who are board-certified in pediatric cardiology. Certification matters!

Congenital heart defects can be found through:

• physical examination (hearing a heart murmur)
• pulse oximetry screening 
• echocardiography,
• electrocardiography (EKGs)
• CT scan 
• MRI 
• Chest X-ray 

Another startling fact about congenital heart disease: About 10 percent of all CHD cases that are evaluated in adult congenital heart clinics are first diagnosed in adulthood — that means there are adults walking around today who have undiagnosed congenital heart defects.

  

Screening does not require invasive testing. Diagnosis and treatment saves lives. Now more than ever, people with congenital heart disease are living longer, active, normal lives. 

Ask.

My Son is a Teenage Athlete

Martin at one of his lacrosse games. That's my boy!

I’m not an alarmist and I don’t over-dramatize situations, but learning about the sudden cardiac deaths of four teenage athletes has had me a little on edge. My son Martin is a teenage athlete and his brother William has a congenital heart defect (CHD).

Ever since William’s diagnosis of scimitar syndrome on March 10, 2005, the question of whether Martin’s heart is as healthy as it has always seemed has been stuck in the back of my mind. I’ve left it there the past six years because I’m neither alarmist nor paranoid.

Well. Until I followed and read the recent stories about Wes Leonard, 16; Matthew Hammerdorfer, 17; Javaris Brinkley, 16; and hearing a personal story about 17-year-old Sarah Landauer of Gainesville.

I know the debates about young athletes and heart screenings. I know there are no guarantees with anything. Any one of us could be hit by a bus on our way home tonight.

I’ve read the checklist of signs, symptoms and histories for student athletes. That we can check no to most of them does little to assuage my anxiety. But a full-on physical check-up will ease my fears about the risk of sudden cardiac death.  

Martin plays an aggressive, high-intensity sport and he has a brother with a CHD. Martin practices lacrosse with his junior-varsity team 15 hours a week, and he plays one to two games per week, and as the starting right attack, he plays 98 percent of the time in each game. I worry. And it's not unfounded worry.

So, on March 10, 2011, six years to the day of William’s CHD diagnosis, our pediatric nurse gave us the dates for Martin’s EKG and echocardiogram. Martin will have his annual physical plus an EKG on today, March 18, William’s due date. Martin’s echocardiogram is scheduled for March 22, William’s birthday. (I’m really not superstitious, but I hate it when dates and numbers fall freakishly together like that.)

I don’t expect anything but to find out everything is normal with Martin and he gets the whole-hearted all-clear to play sports as much and as intensely as he wants.

But right now, he’s teenage athlete who plays vigorous sports. He has a brother with a congenital heart defect. And within a two-week period recently, four teenage athletes have collapsed playing sports. It’s time for Martin to get that EKG and echocardiogram.