As a parent and pediatrician, any mention of sudden cardiac death leaves me feeling uneasy. The stories of young athletes dying or falling on the field are agonizing. All of us here on earth would like to do something to prevent these deaths.
Researchers and cardiologists are working tirelessly to understand predictors for sudden cardiac death in children alongside techniques to improve screening and prevention for young athletes. Dr Nicolas Madsen talked with me about recent work here in Washington State. There’s a video at the end of this post from the interview. I’m lucky, I met Dr Madsen when he was a medical student and now he’s an old friend. He’s one of those bright lights: a compassionate physician and father of three who just gets it and wants to solve big problems. He’s about to finish his fellowship here in Seattle and while completing his training, he’s uncovered some holes in the system. He’s helped me understand how to screen children better. As a parent, there are some simple things you can do to improve the screening your child receives prior to athletic participation.
“Sudden Cardiac Death is a needle in a haystack, but a very sharp one.”
Statistics on Sudden Cardiac Death
- Sudden cardiac death is rare. Studies vary in the incidence but it occurs anywhere between 1 in 300,000 athletes to 1 in 30,000 athletes depending on which study you use. Fortunately, there are some predictors for sudden cardiac death (SCD), as it tends to occur in families. If you have a family history of SCD or a sudden death from heart disease prior to age 50, or if your child has ever passed out/blacked out during exercise or complains about chest pain with sports, talk with your child’s physician prior to any athletic endeavor. Do this now.
- 90% of SCD occurs during or shortly after exertion or exercise, the mean time in life is around 17-23 years of age. Basketball and soccer are the most common sports where SCD occurs (reasons not entirely clear).
- Cardiomyopathies (swollen or misshapen hearts), anatomic abnormalities (congenital and acquired), and arrhythmias (rhythm changes) can all cause SCD in young athletes.
- A sports screening exam (“Sports physical”) or preparticipation physical evaluation (PPE) is the way we screen for sudden cardiac death in the United States. Trouble is, the sports physical may vary widely from one physician to another.
- The American Heart Association put out guidelines for SCD screening that include 8 family & medical screening questions and 4 physical exam findings. Many physicians are unfamiliar with these–I learned quite a bit prepping this post.
Although 44 states require screening of athletes, not all parents and pediatricians/family docs/nurse practitioners know the recommendations. Further, every school seems to have a different form! Dr Madsen and his colleagues set out to determine how Washington State was doing on screening young athletes. The news isn’t as good as we’d like.
Survey Results:
- Cardiologists surveyed 371 athletic directors and 1100 pediatricians & family physicians in WA State. They had very good response rates (over 70% of athletic directors and pediatricians, and over 50% of family doc who were asked responded).
- Athletic directors: 55% of the schools required a sports form but 0% (read: none) of the schools in WA state were current with the American Heart Association’s guidelines. Only 6% of the athletic directors were familiar with the recommendations. But most (66%) of the athletic directors would like a statewide form!
- Doctors: Only 45-50% of physicians doing sports physicals were familiar with the AHA guidelines and recommendations while less than 6% of physicians adhered to the full AHA sudden cardiac death screening guidelines.
What Parents Can Do To Protect Their Children From Sudden Cardiac Death:
- Print out a pre-participation sports physical examination form NOW. Use this form for every sports physical your child has as it prompts the physician to ask and assess the history and physical exam findings recommended for properly screening children. Also find additional forms for children with special needs, history taking forms, and sports clearance forms here at the American Academy of Family Physicians website. Have your child’s physician complete this for the school.
- Ask family members about any history of cardiac death prior to age 50 years, any unexplained death, or any drownings in your family prior the your child’s start in sports.
- If any concerns about heart murmurs, history of fainting with exercise, family history of cardiac or unexplained death, high blood pressure, or complaints of chest pain during and with exertion or sports — go see the doctor. Ask about an EKG/ECG.
- ECGs are good at screening for sudden cardiac death. If any concerns about your child’s heart or any concerns about your family’s history, advocate that your child has an EKG.
- Ensure your child’s school, athletic team, and coach have an AED (automated external defibrillator) available during all sporting events. Ask and help make sure team coaches and directors know how to use an AED.
Ask questions here. Get your kids out there and enjoy sports. Download these forms. Share the links for the sports forms with your friends and with your child’s athletic director. And then rest easier knowing you’ve done what you can do to improve protection for your child. Dr Madsen will stop by and assist with questions as needed.
Claire says
Very interesting (and terrifying!). At what age does it make sense to start getting more information on kids’ hearts? Do we wait until high school or is there any reason to start asking and investigating this for elementary school kids? Thanks!
Wendy Sue Swanson, MD says
Great question, Claire.
The short answer is that if you have any concerns, there is no reason to wait to talk with your child’s physician. If you have a family history of sudden cardiac death, or any concerns about high BP in your child or exercise intolerance, ask now.
I will defer to Dr Madsen about timing in EKG screening for athletes of school-age versus teens.
Dr. Nicolas Madsen says
Claire,
I agree with Dr. Swanson – if there is a strong family history, then it makes sense to talk to your doctor even if your child is more in the elementary school age range. The family history in question would be a sudden death in a first degree relative less than about 40 years of age or any family history of diseases such as Hypertrophic Cardiomyopathy, Long QT Syndrome, or Marfan Syndrome.
Regarding EKG screening, probably the earliest age one could consider screening kids is around middle school. However, the convention is to screen in high school. This is largely for two reasons. One, the risk for sudden death is higher as the child ages, which is in part explained by the capacity of the child to push himself/herself to more vigorous levels of exercise with age. Thus, the playful second grader on the swings at school is at very low risk for any type of cardiac event. And two, several of the diseases that place a child at risk are progressive such that a normal EKG screen at the age of 12 may not reveal the signs that would be better recognized at 16.
This discussion about the age of screening hits on one of the most troubling aspects of large scale screening programs – at some point certain cut off points most be choosen (such as age) and unavoidably this means that certain members of a population (younger kids in our example) will be missed. However, if no cut off points exist, then the potential for false negatives (those with disease who are falsely cleared) and false positives (those without disease who are falsely labeled as at risk) becomes too cumbersome and sinks the opportunity for a successful screening program.
James Beckerman, M.D. says
Great post! Thanks for emphasizing the surprising variation in cardiac screening across the United States. It’s also important to note that screening questionnaires are unfortunately not terribly sensitive in picking up hypertrophic cardiomyopathy and other causes of sudden cardiac death. Electrocardiograms are much better. While they do increase the likelihood of false positives that may require further testing, like an echocardiogram, I believe that we will see an increase in screening with ECG’s in the near future as health systems figure out how best to use resources to perform and interpret them. Thanks for making people aware!
Scott Driscoll says
As a parent who lost a 13 year old to sudden cardiac arrest as a result of hypertrophic cardiomyopathy, I want to respond to your article and call out the need to go beyond a reposting of the same information over and over again. Although I applaud your efforts to educate and raise awareness, little is published about how serious this problem really is. Not just the same data being regurgitated over and over again, but someone to talk about how little the medical community really understands about sudden cardiac arrest in our young.
First and foremost, the medical community appears to be driven by statistical data surrounding sudden cardiac arrest in the young that is neither valid nor germane to truly driving to a ubiquitous solution to the problem. The data collect and published is not scientific; it is based upon hearsay and aggregation of media publications of youth who have suffered sudden cardiac arrest (SCA). Therefore, the data is merely a hypothesis at best and should not be used as guiding principle.
Although not widely known by the general public, our medical examiners, coroners and those who conduct post mortem examinations are grossly negligent in the identification of specific causality of death, especially surrounding sudden cardiac arrest in youth. Organizations like The National MCH Center for Child Death Review find it very difficult to garner accurate statistical data on causality due to lack of adequately trained and regulated medical examiner professionals. I would argue then that a substantial number of deaths in our children, especially those where cardiac arrest occurred is either not identified or misdiagnosed at point of post mortem examination.
The medical community in the United States lacks resources in the area of pediatric cardiology. The delta between resources that are available and what are needed is an alarming issue. I would argue that those in the practice of pediatric cardiology, if reasonably staffed, would be acting more pro-actively to identify issues prior to a tragic event taking place. Unfortunately, with the laws of supply and demand, resources and expertise required to absorb routine cardiac screenings as part of a well-child examination appears to be out of reach. This is something the medical community needs to remedy by training all cardiologists how to comfortably identify anomalies of the heart, regardless of patient age.
There is a fear that if we screen children for cardiac issues, there may be instances of false positives. As a parent, it would be very upsetting if my child were diagnosed with a false positive. I can understand the inconvenience, consternation and stress it could cause. However, the alternative is one of irrevocability. I would trade a thousand false positives to have my son sitting next to me. Not unlike the false positives that occur in all of medical testing, cardiac screening evaluation will improve as the practice becomes routine and those conducting the screens are adequately trained.
Finally, the readers should understand that the biggest argument against proving pro-active cardiac screens for our children is cost. I can empathize with this argument, however as a parent who lost a child to SCA, I would have foregone a week’s worth of coffee’s or bought the $80 cleats instead of the $125 models to pay for a heart screen. There is a groundswell taking place in this country where community based foundations are driving screening for our kids. With support of progressive physicians and medical professionals we’ve seen evidence where the cost of a pro-active cardiac screen to under $20 per child. In some cases, well under $20. I ask, what is the value of a human life, especially that of a child?
Wendy Sue Swanson, MD says
Scott,
Thank you for your informed comment. I have read it a number of times. First of all, I am so sorry for your loss. I am so impressed and thankful for your tenacious advocacy.
My intent here wasn’t to regurgitate information shared elsewhere but to share links that were NEW to me as a practicing pediatrician and mother — and to encourage use of PPE forms that prompt improved screening prior to athletic participation.
1) I agree with you in regards to the delta being large between universal screening funding and where we are. From what I understand, it isn’t solely cost-based, but rather a mix of cost restriction and properly trained EP peds cardiologists to review EKGs. I also believe we can minimize the divide. You let me know how you think I can help if you ever think of a way.
2) It is my hope and understanding that it may take not only training more adult cardiologists to screen children for potential risks for SCD, but also pediatricians like me. My hope is that universal pre-teen EKG will be the norm and that pediatricians will be trained to read the EKGs on all children as the first line of screening and then advance the EKG review to a cardiologist to avoid avoidable false positives. I have already offered to be a part of a study or pilot to make that happen.
3) I plan on getting my boys an EKG prior to sports participation. If I have to fight to make that happen, I will tell my story to the world. I will write about this again this summer.
4) Lastly, I was surprised to find out we don’t really know how many children die from SCD when I prepped for this post. I left it open (1 in 300K to 1 in 30K) because it is unknown and as you say some of the numbers collected come from media reports,etc. And so your point is well taken. I await a cardiologist’s interpretation.
Dr. Nicolas Madsen says
Scott,
I would like to echo Dr. Swanson’s sentiments. I can’t imagine the emotional anguish of losing a child, and I too am very sorry for your loss.
I have, however, had the experience of standing side-by-side with parents in your similar situation minutes to hours after they too lost their child as a result of a sudden cardiac event. These are terrible, horrible, unjust events. The families are left not only with loss, but also with innumerable questions of “why?” and “how?”. And it is for these reasons that change will come.
You make many excellent and carefully considered points about SCD screening. And you are right, the field of pediatric cardiology is not currently prepared to speak to this issue with a level of absolute certainty. This is why we are so focused on some of the statistics that you mention. We need to define the prevalence of these events, because the investment in preventing them is costly, and much more importantly, logistically challenging. Currently, we dedicate $250 million dollars annually to screening kids for their risk of SCD, and even with this large sum of money, we are not doing well enough. As Dr. Swanson outlined above in her original post, if we are to rely solely on the history and physical to screen our kids for SCD, then we need to do better. Because if the history and physical are not good enough, then we need to move beyond them.
However, it is this step of moving beyond that it so hotly debated. There is no doubt that if every child received and EKG and ECHO (heart ultrasound), we would find more cases of kids at risk for SCD before the catastrophic occured. However, it is also 100% impossible to screen 8 million high school athletes (the annual total in the US) with an ECHO (and this does not include all the middle school students). There simply are not enough machines or people for this task. Therefore we are left to discuss the EKG.
You are correct, the EKG is quick to do and by medical standards quite cheap (less than $20). And yet, what is not so quick and easy is the interpretation of the EKG. This is a subtle art and one that requires a great deal of repetition to master. Pediatric cardiologists are properly trained to carry this out in a reliable manner, but that training takes time. Pediatricians and Family Medicine doctors are certainly completely capable of also mastering this skill, but is there a cost to that time learning? Are they then going to use less time mastering another equally important skill? Maybe not, but as I am sure Dr. Swanson will attest, the general practitioners of this country are not exactly rich with time these days. Of course, time spent potentially saving a life could not possibly be more important.
Thus, this all brings me back to my original point (and if I may, part of your original point). What is clear is that far too many times a year, parents like Scott suffer the unimaginable horror of losing a child suddenly and without real explanation. It is our job in the medical community, and pediatric cardiology in particular as the leaders on this question, to continue to work to define the scope of the problem and then work toward a better solution. And although research can be slow and occasionally circular, it is the only way we can aim to make progress in a measureable way.
Scott, I wish you continued strength and success as you advocate for this worthy cause. I myself have partnered with the Nick of Time Foundation here in Seattle to slowly and steadily make progress. And if you have an interest in working with us, I know it would be most welcome (same goes for anyone else who might be interested).
Joe Hage says
Wendy, why no mention of AEDs?
As you know, with sudden cardiac arrest, often the first symptom is death. I put an AED in my kids’ school, library, and church. I keep one in my trunk too.
Wendy Sue Swanson, MD says
Joe–
That’s another post. Will do that one, too. The omission isn’t intentional but in doing my best to limit the length of posts, I have to make choices.
You’re incredible–a thoughtful/intelligent move to put AEDs in all of those places. I don’t have an AED in my trunk. What’s the best data/experience you have to support your decision to have an AED in the trunk? Please share.
Wendy Sue Swanson, MD says
Joe– I take it back. I added in a line about AEDs with a link to an AHA video that demonstrates how to use an AED on a child.
Thank you for helping me get it in there!
Susi says
I was a former athletic director at my K-8 school in San Francisco and we use the forms you posted for our 6-8 grade athletics program. Our whole district uses them for both middle and high school. They are required and students cannot be on the practice field without one. Hadn’t thought about SCD and didn’t know the statistics until now. So scary. Thank you for sharing!
Dr_som says
Love this post and timely. I was thinking of writing on this very topic for my website. Now I’ll just send my patients here. In Ohio, high school athletes need this form but no std for younger kids:https://www.ohsaa.org/medicine/ppe.pdf
Erik says
Great advice. I would also suggest parents look into whether or not their child’s school or place of activity has an automated external defibrillator (AED) and has staff trained in CPR, should the unfortunate occur (full disclosure: I work for an AED manufacturer). Also, The Nick of Time Foundation (www.nickoftimefoundation.org) is a great resource. It facilitates youth heart screenings locally, helps to provide program resources for public access defibrillator programs and teaches the importance of early bystander CPR/AED education and awareness, in an effort to provide “Heart Safe Zones” in our communities.
Wendy Sue Swanson, MD says
When you sell your AEDs, are you encouraging that people log and track where they are for public good?
I mention this as a new link was shared with me today. A crowd-sourcing tool. If we can get all the AEDs registered here by GPS tracking, in an emergency, we could log on and find the closest AED. And if the data was open-sourced, any number of app developers could use it and get it into parents/coaches/patient’s hands.
check it out:
https://www.aed4.us/
Erik says
At Physio-Control we do track where AEDs are sent after purchase, namely for device update purposes, but we don’t monitor where customers place them once they come out of the box. Our Heart Safe Solution AED implementation/readiness program customers can track their AED deployment locations via a tool, but that is intended for customers’ internal use.
The issue of public AED awareness is a significant challenge. One reason being is that each state has its own regulations on how AED owners are required to report their AED installation to EMS agencies and public health agencies.
In addition to the AED4.us location registry tool you mention, the one that seems to have gotten a lot of attention of late is the University of Pennsylvania’s MyHeartMap Challenge (www.med.upenn.edu/myheartmap/), which Physio-Control, along with other AED manufacturers, is a sponsor of.
It, too, is a crowd-sourced project, but where it differs is that it operates as a contest with cash prizes for individuals or teams reporting the most AED locations. The pilot in Philadelphia revealed 1,100+ AEDs during a two month period! We look forward to this growing to become a nationwide, crowd-sourced AED registry project that will put the lifesaving devices in the hands of anyone, anywhere, anytime
In the future, all AEDs will have location technologies embedded in them like smartphones.
Angie G says
You mentioned the mean age for SCD is 17-23 y/o. My son is only 2.5 y/o and my daughter is only 4 months, however both have a heart murmur (which I understand may resolve with age) attributed to PFO per echocardiogram. Is this type of anatomic abnormality consistent with an increased risk for SCD? At what age do you recommend advanced screening (EKG) begin? As soon as they begin organized sports? And how often to you recommend retesting?
Thank you for this informative post! I listened to you speak at Cerner and have been following you ever since. I appreciate you for taking the time to educate us to topics like these that I’m not sure I would have brought up with our pediatrician otherwise.
Wendy Sue Swanson, MD says
Angie,
PFO (patent foramen ovale) is a very common finding in children and adults. Most studies find that 25% of people have a PFO. PFO alone is not a risk factor for SCD in any study I reviewed and from what I have been taught. In general, most people find that PFO is an incidental finding more than clinically relevant finding, although new research links PFOs with migraine headaches in adults and more recently in children as well. See: https://contemporarypediatrics.modernmedicine.com/contpeds/article/articleDetail.jsp?id=716689
My understanding (from comments above) is that if you were to do a screening ECG, it would best be done in the pre-teen years. Currently, no official recommendation for this for various reasons, also discussed above.
Dr. Nicolas Madsen says
Angie,
I agree with Dr. Swanson’s reply that PFOs are not associated with a risk of SCD. Murmurs are very common in childhood, and if your kids have been checked out and no abnormalities discovered, then you should feel very reassured.
I would hope that whomever evalauted your children impressed upon you that PFOs are a very normal finding and should in no way preclude your kids from participating in any activities/exercise of their choosing. Dr. Swanson is correct that PFOs have been linked to migraine headaches, however this link should not be treated as absolute (there remains quite a bit of debate on this topic).
If your family does not have any other strong family history, then I would have your kids checked for their sports physical at the usual time (late middle school/early high school).
Ann says
I am a family doc in a relatively large town of 50,000 or so. We have only 2 pediatric cardiologists in town, which means that when I had a 15 year old softball player in who “failed” her preparticipation screening (meaning she had chest pain and SOB with exertion) the EKG I did on her took 4 days to get over-read by the cardiologist after I felt it looked just a touch off of normal. In the end she was fine and just needed a little albuterol, but the point remains that even in big towns peds cardiology is a limited resource. Perhaps telemedicine is going to play an ever increasing role in my life.
The loss of even one child is a great tragedy, and the spectre of that lingers every time I sign the form saying they are clear to participate without restrictions.
Jacquie says
I am trying to gain data to support the need for AEDs in the schools in our community. Do you think they should be in elementary and middle schools? Many people seem to think they are only important in high schools. Any reference data you could direct me to would help. Thank you.
Sha says
This is bullcrap. My son saw a cardiologist all of his life and played sports all of his life with noooo problems until one day he collapsed as a result of going into cardiac arrest. I’m so sick of these heart healthy ads and folk saying do this and do that and be physically active for your heart and that physical activity was the very thing that helped kill by son.
Julia says
I am so sorry you lost your son. I think that Dr. Swanson is trying to help find a way to prevent more tragedies like yours from happening by writing this post. I don’t think she’s trying to push sports/physical activity on anyone.
Diane Dudley says
Dear Dr. Swanson,
Although we have had a screening and are aware of an abnormality, asymptomatic WPW, several cardiologists and EP specialists we have consulted with do not support stopping competitive aggressive sports. This is confused to us because all the information we find seems to indicate that this where there is the highest risk in young competitive athletes. We would like to stop the sports, but we do not have any support for this in the medical community.
Can you please shed some light on this issue. Do you support stopping competitive aggressive sports after a diagnosis of asymptomatic WPW?
Thank you,
Joanna says
My 14 yr.old suffer a Sudden Cardiac Arrest last month. He had a sport screening to start his basketball season, he fainted on April at his game in a tournament, again on May in other tournament, had the EKG, ultrasound done by his pediatrician, ER, paramedics, send to a cardiologist, then he had his SCD in November, what are they missing? why we were not able to prevent?what test was not conducted?Please let me know, what I should be looking? dr. Madsen are you in Washington State? how can we get to talk to you?
Tobie Countryman says
Our 17 yr. old daughter was very recently diagnosed with a condition called PAPVR (partial anomalous pulmonary vein return). Her symptoms are Edema in her legs, While doing activity(basketball)she has a hard time catching her breath, foggy thinking and legs feeling heavy. We have been told 4 different times that she can continue playing while we are waiting to see the Cardiologist. Each practice and game has continually gotten harder to perform. As of today she/we have had her stop participating in the sport for fear of the worst. We are certainly not very educated with her condition at this point, but I was hoping for some comments or advice. Thank you. Tobie
Wendy Sue Swanson, MD, MBE says
Hi Tobie,
Thanks for reaching out. I can’t provide direct medical advice here, unfortunately, but I think your instinct is a good one until you touch base with a pediatric cardiologist. If you’re unable to see them in the near future (next week or so), perhaps get in touch with her pediatrician today to inform them of her updated symptoms?
Tobie Countryman says
Thank you Dr. Swanson for replying. We see Dr. Hardy on Mon. here in Bozeman Montana to go over all the testing that has been done and then it sounds like he will get the ball rolling for her to head to Seattle Childrens Hospital. Yes, the pediatrician has been informed this week of the continuing symptoms and it was left up to our daughter as to if she could handle playing or not. That was the fourth time we were told that “yes” it is o.k. for her to play. She knows her body well and made the decision to stop playing. Thank you again, Tobie
Wendy Sue Swanson, MD, MBE says
Glad you’re connected and in good communication with your care team. Will be thinking of you all as you learn more!
Faith Bullock says
I see that these posts are old but I just saw this site and had to respond. Sha, I am a sorry you lost your son. My 15 year old daughter died almost 19 months ago, April 2nd, 2013. She complained of chest pain since she was 6 years old. She had numerous Ekgs both by her cardiologist and in the emergency room, she wore a holter monitor twice, had echocardiograms you name it I was told over and over and over again she was fine!! She complained of chest pain, rapid heartbeat, had difficulty breathing during sports but was told it was asthma she went Into cardiac arrest after being a pediatric cardiology patient most of her life and the medical examiner was not able to find anything wrong with her and her official cause of death is undetermined!! It is soo frustrating and I keep reading about getting kids an EKG she had many Ekgs and the EKG never saw anythig so what is the point of an EKG??
Anthony says
Wendy Sue Swanson, MD, MBE,
At 26 they just found I have papvr 1 isolated vein to the superior vena cava, no other associated defects. They said my RV is mildly enlarged but the RV and lv function was normal and nothing else was wrong. Can I play sports with this? Is this a risk for scd? 1 papvr with no other defects, seen on cardiac mri
Help please
Wendy Sue Swanson, MD, MBE says
Hi Anthony, Unfortunately I can’t provide medical management responses here, and as a general pediatrician I wouldn’t be the appropriate person. Consider a second opinion with a congenital heart specialist to reassure yourself, build trust in the recommendations, and understand more?