Sudden Cardiac Death in Student Athletes

This morning as I peruse the daily news with my coffee to start my day off, I come across an article about a 14 year old young woman died during a track meet.  Her autopsy revealing an undiagnosed congenital heart defect, a tragic death.  Working with congenital heart disease, stories like these and ones I have seen personally about the impact of undiagnosed CHD will follow me the rest of my career.

One thing I always like to do is to look for other peoples perspective, I live in the world of congenital heart disease and sometimes I forget what it’s like to not understand a disease process or just someone elses point of view about CHD.  I went to check out the comments left by people and some of them were quite frustrating for me to read.  Before anyone gets upset or angry, let me say, everyone is entitled to their own opinion and to be respected for their own opinion!  If you’re a comment gawker like myself, you have seen the comment wars erupt, insults flung, and the comment trolls, I’m sure.

Anyways, back to the comments that got me thinking and were quite frustrating.  Parents were commenting how they were going to demand an echo at their next visit with their child’s pediatrician, no matter what! Their child has no symptoms but is an athlete, so they must have an echo to play sports.  One mom went on to say her child had a disease that is usually diagnosed by EKG, her child’s diagnosis was not seen on EKG (this is EXTREMELY rare) which this mother shared and then the comments really got going into

-EKGs are useless (don’t even order one-just order an echo)

-doctors are useless and can’t do their job, parents should just google any concern they have, go to their doctor and demand these tests and they will be ordered or their manager will be called and a formal complaint will be filed since the doctor ignored our concerns.

-And don’t even send a nurse practitioner or PA near my child!

-Send me to a cardiologist when my child has no risk factors just to be sure

Now, I’m a educated adult and trained professional with a medical background so I know to take these comments with a grain of salt but what about everyone else reading these comments?  There was over 300 comments  and counting on this article that was two hours old of people listening to non health care professionals on what screening test should be done on their student athlete with no evidence to back it up.

The number on cause of death is student athletes is sudden cardiac death.  This statement is terrifying to me and to many other people in the community.  Do you know what percentage of the population that is? This varies widely based on the resources you use but according to the American Heart Association it’s between 0.6-6.2 per 100,000 people.  Is this enough to warrant an EKG and echo on every student athlete?  If you ask the family of a child with an undiagnosed CHD that passed away or a family whose child’s problem was caught by a screening you will hear a resounding yes, understandably so.  There is a debate in the medical community in who should be screened and what that screening should include.  When a screen shows something abnormal, when do you restrict sports, if at all? When communities provide screenings, how many issues are diagnosed, if any? What’s the cost? How many referrals were sent based on a false positive? Was undue stress created for families if there was a false positive?

Things to keep in mind is your child’s pediatrician knows you and your family, it’s ok to talk to them and voice any concerns you have.  Have a conversation with them of your concerns and discuss if any diagnostic tests are warranted.  Your child’s primary care provider went through rigorous training to provide this care, they didn’t get their diploma out of a cracker jack box! Also your primary care provider has probably known your family for some time and knows your family history.  A thorough history and physical is the MOST important part of any screening, diagnostic tests can compliment a good H&P if warranted.

Google is a wonderful tool, I love the fact I don’t need to go to the library to look up every detail for a project and the most up to date info is right at my hands and late night online shopping.  Googling medical conditions can be deep, dark hole.  If you google stubbed toe, you can walk away with the idea you have bone cancer, not just a stubbed toe that needs some ice and will feel better in a day or two.

Googling medical conditions CAN be a great resource for patients and family members if you use reputable websites and you discuss you concerns with you primary care provider.  I think it is great when families come in with a list of questions they have found in their research, but sometimes a support group full of people you don’t know on the internet is not the best place for a medical diagnosis and treatment advice.  It’s a great place for caregivers and patients can come together to talk about daily life, networking with others who have some understanding of their condition, how they cope with their symptoms but diagnosis (as in the group diagnoses yourself or your child when you provide a list of symptoms) and medical advice not so much (answering questions like my child is having chest pain, what should i do?).

Every child who is going to play a sport should have a physical prior to participation.  Discuss with your child’s primary care provider if further testing is needed based on exam and history.  Even if diagnostic tests are done, false positives can occur leading to denial to play sports.  Screening tests aren’t cheap either, the average price for an echo is $2500 in my neck of the woods.

Their is no perfect answer or test  to end this debate yet when you look at the whole picture, sadly.  If you are looking for more opinions or the latest research articles, the American Heart Association and Screen across American are great resources in addition to your primary care provider.  My hope as the world of congenital heart disease continues to rapidly expand and more research is done, a screening tool will be there to detect any CHD at birth so no child has to die from an undiagnosed congenital heart defect.  1 in 100 children are born with a congenital heart defect.

This article is not medical advice, it is just my opinion.