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.

Medical-Specialty Board Certification: It Matters

“Any doctor can deliver a baby, treat cancer, or declare himself a cardiologist. Certification means the doctor had special training in that field and passed an exam to prove knowledge of it.”

Six years ago, I would have said Associated Press writer Marilynn Marchione was exaggerating in her recent article, Doctors face board specialty 'expiration dates'.

Had my son never landed in the hands of a physician who “declared” himself a specialist, I might still think that way. But he did. So I don’t.

In a previous post about my son William’s heart murmur, I mentioned “the eight-month-long road to a correct diagnosis was ill-paved and rife with potholes.”

I’d like to explain now.

At William’s four-month well-baby checkup, his exam revealed The Heart Murmur. The pediatrician (whom we no longer see) referred my son to a specialist -– “a pediatric cardiologist,” the pediatrician said -– to evaluate the murmur.

If only I’d known then, what I know now: verify credentials yourself. You can’t rely on referring physicians. They might not have verified credentials. They might be assuming a specialist is certified. Or, the specialist might be so rooted in the community that everyone assumes he/she is a board-certified specialist.

You also can’t rely on advertising -- even though (in Florida anyway) claiming you’re board certified in an area you are not board certified in is against the law.

If I could do it again, my first stop would have been here, so that my second stop could have been with a real pediatric cardiologist. Despite what the pediatrician said, the local physician who sees pediatric heart patients is not this area’s “only option.”

Knowing what I know now, I'm not at all surprised this physician misdiagnosed my son. Not just once, but twice. This doctor is nothing more than a pediatrician who completed a pediatric cardiology fellowship ... 35 years ago. Since he's not board certified in pediatric cardiology, there's nothing to show he has pursued any continuing medical education (CME) in this area.

And there have been so many advances in CHD diagnosis, research and treatment over the past three-and-half decades, it hardly seems possible he could have stayed relevant without a lot of CME.

Physicians I love and trust implicitly have told me William’s congenital heart defect (Scimitar Syndrome) is not an easy one to diagnose -- implying I should cut the doctor some slack.

But if it's so hard to figure out, I ask them, then please explain how William’s eventual correct diagnosis was made by a mere pediatrician and pediatric radiologist? Neither of them specialize in, or have had concentrated study in pediatric cardiology.

Really, if not a pediatric cardiologist, then who is imminently qualified to diagnose congenital heart defects -- even those that are difficult to diagnose? If you're going to "declare" yourself a pediatric cardiologist, then you'd better well know what you're doing!

After William's diagnosis, we requested a referral to the University of Florida Congenital Heart Center -- one of this area's many options. The physicians there are extremely competent, very compassionate and ... board certified.

About 15 months after William's open-heart surgery, I filed a formal complaint with the Florida Department of Health. The complaint included misdiagnosis of condition and false advertising. However, DOH declared the physician had done nothing wrong. Nothing. Not even falsely advertising himself.

I also e-mailed the American Board of Pediatrics about the physician’s advertisements. Although the ABP can’t tell me what, if any, action it took, I noticed that about six weeks later, the physician no longer held himself out in advertisements as a board-certified pediatric cardiologist.

Marchione writes in her article, “The next time you’re at the doctor’s office, take a peek at those certificates hanging on the wall. Like gallons of milk, some of them are expiring.”

Better yet, make sure from the start they even have certificates.

The American Board of Pediatrics sponsors a campaign called “Certification Matters.”

And let me tell you: It. So. Does.