Tag: children

Damar Hamlin’s Cardiac Arrest Should Move America to Action

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Sudden cardiac arrest (SCA) has had a moment in the public eye this week.  The NFL game between the Cincinnati Bengals and Buffalo Bills, which was postponed after Bills safety Damar Hamlin suffered a cardiac arrest and collapsed on the field, was, according to CNN, the most-watched “Monday Night Football” telecast in ESPN history, averaging 23.8 million viewers.  

Damar Hamlin’s misfortune shined a public light on the grim reality that we as HCM patients live with every day:  the possibility we could suffer SCA at any moment without warning.

HCMBeat has written before about fellow HCM patient Lindsay Davis, who uses her platform as a former Miss Ohio to effect positive change for those with heart issues.

Lindsay pic 2022

In fact, Lindsay successfully lobbied for what is now known as “Lindsay’s Law,” which educates coaches, parents and athletes on the signs and symptoms of an underlying heart condition and removes a child with symptoms of heart disease from play until cleared by a cardiologist.

Now Lindsay has taken the opportunity to write a compelling op-ed for Newsweek about the need for cardiopulmonary resuscitation (CPR) and automatic external defibrillator (AED) training in the community. As Lindsay correctly points out, Damar Hamlin suffered a cardiac arrest in a NFL stadium surrounded by trainers, medical personnel and the most up to date equipment.  Children who play sports do not have the same  advantages. If a similar situation occurred on a school baseball diamond or a playground basketball court, it is likely that the bystanders would not be so prepared to render aid.

Some of you may know that I have been a lifelong fan of the New Orleans Saints football team. Gayle Benson, the owner of the Saints and the Pelicans, the local NBA team, did something that I hope will serve to inspire other professional teams to do for their communities. Mrs. Benson reached out and, finding there was a need, donated a total of 67 AEDs to the New Orleans Recreation Department (NORD) and the neighboring Jefferson Parish Recreation Department (JPRD).  Mrs. Benson will also provide CPR and AED training to NORD and JPRD personnel so they know what to do in the event of a cardiac arrest at their facilities.

Time is key when a person suffers a cardiac arrest.  According to the American Heart Association (AHA), 350,000 cases of cardiac arrest occur each year outside of a hospital, and the survival rate is less than 12 percent. CPR can double or triple the chances of survival.

A 2018 study highlighted on the AHA website shows the great benefit of being resuscitated by an AED following a cardiac arrest.  Read the following statistics:

  • Cardiac arrest victims who received a shock from a publicly-available AED had far greater chances of survival and being discharged from the hospital than those who did not; 66.5 percent versus 43 percent.
  • Cardiac arrest victims who received a shock from a bystander using a publicly-available AED had 2.62 times higher odds of survival to hospital discharge and 2.73 times better outcomes compared to victims who received their first  AED shock from emergency responders.
  • Victims who received an AED shock from a bystander (57.1 percent) using a publicly-available device instead of having to wait for emergency responders (32.7 percent) had near normal function and better outcomes.
  • Without a bystander using AED shock therapy, 70 percent of cardiac arrest patients either died or survived with impaired brain function (emphasis added).

More information about the chain of survival can be found on the American Heart Association website.

If you are looking for a New Year’s Resolution (or even if you aren’t!) take the time to learn CPR and learn how to use an AED today.  AEDs are so simple to use that even a 5th grader can administer properly.

And here is short video from Mayo Clinic showing how to do hands-only CPR.

And if you are a heart patient, think about getting an AED for your home.  I myself have one in my dining room.

AED dining room

Finally, I am sending out my best personal wishes to Damar Hamlin for a complete recovery. (As of this writing, he appears to be well on his way.)  

Most of all, I am sending out my sincere hope that this disturbing incident will improve the chances that the next person who suffers cardiac arrest will be lucky enough to be in the right place at the right time for complete resuscitation.

Wishing the entire HCM community a happy, and most of all a healthy, New Year. 

Cynthia Burstein Waldman  © 2023

All views expressed herein are my own.

Women and Babies Get HCM Too

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Recent HCM research has taken a much needed pivot away from a focus on adult men to the exclusion of others. Women and babies get HCM too, yet until this point, there has been far less attention and research on their issues. HCM is not just a disease of adult men, though they do make up the majority of participants in research studies which inform current treatment protocols.

Finally that may be changing.  It seems that people are finally starting to pay some attention to other folks who have HCM.  Here is a recent European article looking at HCM in infants  and here is a recent article looking at HCM in women. 

Let’s hope the trend continues since previous research has shown that HCM is often more severe in these two groups. 

This past article on HCMBeat takes a look at the more severe clinical course of HCM in women while this past article discusses the severity of HCM in children.

Risk Assessment in HCM Children

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A recent study published in the European Journal of Preventative Cardiology found that a 12-lead electrocardiogram (EKG) was not useful as a screening tool to determine which children were at increased risk of sudden death and therefore, a candidate to receive an implantable defibrillator. 

The full article can be found here.

Kids with HCM

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A recent study published in the European Heart Journal using data collected from the SHaRe Registry found that while childhood onset HCM (15% of all HCM) is far less common than adult onset HCM, it is often more serious.

Children with HCM are more likely to have sarcomere mutations, have a higher risk of ventricular arrhythmias, and are twice as likely as adults to require advanced interventions like ventricular assist devices, heart transplant or other advanced heart failure therapies. 

When Do You Screen Your Kids For HCM?

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A recent study published in Circulation suggests that clinical testing of kids who are first degree family members of HCM patients (i.e. siblings and children of those who have already been diagnosed with HCM) could be improved by starting testing at a younger age. And, genetic testing should further improve diagnosis and treatment for this group.

Continue reading “When Do You Screen Your Kids For HCM?” →

Are HCM Kids With MYH7 Gene at Increased Risk?

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A recent Canadian study found that children with HCM who carry a single mutation in the MYH7 gene or who have multiple HCM-causative genetic mutations are at increased risk of major adverse cardiac events when compared to children who carry a single mutation in another gene.

Of the 98 gene positive children in this study, those with a MYH7 mutation or those with multiple mutations were more likely to need a myectomy or an ICD or to experience a sudden cardiac arrest or a heart transplant when compared to children with other HCM causative mutations.

The article also suggests that current screening protocols which recommend clinical and genetic screening for HCM beginning at age 12 may be insufficient.

Positive HCM Outlook for Gene + Kids

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A study at the University of Amsterdam recently published in the Journal of Pediatrics found that most kids carrying a gene for HCM will not go on to develop HCM during their childhood.  

The same study also found that gene positive children without overt signs of the disease are at relatively low risk for cardiac events.

The study included 119 children, positive for at least one HCM gene, with a median age of 12.1 years.  8 of these children (6.7%) received a HCM diagnosis within the time span of the study [which varied from 3.1 to 10.7 years].  1 of the 8 diagnosed children suffered a cardiac event which necessitated implantation of an implantable cardioverter defibrillator or ICD.

The study did caution, however, that because severe hypertrophy and cardiac events may develop, it is important to refine risk stratification and long term follow up procedures for gene positive kids.

Severe Pediatric Cardiomyopathy Causing Gene Identified

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A recent article in Science Daily discussed findings of geneticists in the Netherlands which revealed the existence of  a mutation in the gene alpha-kinase 3 (ALPK3) which, if inherited from both parents, may cause severe cardiomyopathy in children.

Cardiomyopathy U.K. recently featured this story on their website.

See here for study.