6 days ago
Three years ago, teenage athlete Preston Settles collapsed on a basketball court. His legacy lives on.
'Preston was a fun-loving, life-loving kid, with a little bit of devilish thrown in as well. He had fun, he loved his friends, and he enjoyed life every day. He had a great time; no bad days. He could disarm people and really get to know people. I love the fact that, when you were with him, he was just locked in. He wasn't walking out the door. If he was here to talk, he'd flop on my bed and was all present,' Owens says.
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On Wednesday, he definitely was present: The family held a fund-raiser for the Preston Settles Memorial Fund at The Cyclorama at the Boston Center for the Arts. The funds go toward providing automated external defibrillators (AEDs) to every youth-supporting facility in Massachusetts. In addition to food from star chefs like Douglass Williams and Lydia Shire, live music, and a casino, there was a strong medical component: Zoll Medical Corporation, which manufactures AEDs, was on-site to teach people how to use them. The American Heart Association trained guests in CPR.
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'We're trying to make people aware that AEDs have got to be in a place where people can actually see them and know where they are. We need to start thinking about that at all times. It doesn't matter whether the kid is 15 years old, as my son was, or if it's a 65-year-old male or female,' says Settles, a longtime restaurateur and real estate developer. 'AEDs are so efficient; they actually tell you what to do. I'll tell you: I had no idea there was such a thing as a portable AED before my son collapsed.'
Last year, to raise more awareness, the family introduced Bill H.4121 (The Preston Settles 'Every Minute Counts' Act). This legislation will require AEDs at all public sporting events in the state with identifiable trained personnel to facilitate their use when needed. The bill is currently wending through the state Senate for final approval.
Preston Settles died of sudden cardiac arrest spurred by hypertrophic cardiomyopathy (HCM). With HCM, the heart muscle thickens. This can be asymptomatic, but the thickening can also cause shortness of breath, chest pain, and life-threatening irregular heartbeats, potentially leading to sudden cardiac death (SCD).
SCD is the leading cause of death among young athletes — but rare enough that, when it happens, not enough people know how to react. When a kid drops on a field, people can go into freeze mode. Owens wants parents and bystanders to know what to do, similar to being able to react quickly when a fire alarm goes off.
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'My goal is not for anybody to be scared or fearful. The goal is for people to be prepared. If there's fire, if we smell smoke, we think about where we're going to go. We think about exits. Some families might have a meeting place. Fire is a reality, and sudden cardiac arrest is a reality,' Owens says. 'When someone is having an arrest, recognize the signs and then have that same stop, drop, roll response that was drilled into our heads when we were kids.'
The family wants to ensure that schools and teams have fully enforced emergency response plans and that everyone — parents, coaches, spectators — knows where to locate the nearest, easily accessible AED and is up to date on CPR training.
As a clinician and a mom, Owens wants other parents to know: 'If your kids are lightheaded, dizzy, or having palpitations, have the lowest threshold to get them checked out by their doctor. Don't assume it's dehydration,' she says.
Dr. Carolyn Ho, medical director of the Cardiovascular Genetics Center at Brigham and Women's Hospital in Boston, tested the Settles family for HCM in the wake of Preston's death. A cardiac MRI revealed that Darryl Settles has a minor cardiac thickening; he now has a defibrillator.
Preston Settles died at 15 after collapsing on the basketball court during a game at Brooks School in North Andover.
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While a cardiac MRI is an advanced step, Ho wants families to begin by examining their personal history: Are there other family members with a history of cardiac problems? Sometimes, though — 'and this is the thing that's scary,' she says — there just aren't preceding symptoms or family history. HCM can appear seemingly out of nowhere. Worse, many athletes are conditioned to push through physical discomfort.
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'Cardiac arrest can happen to healthy youngsters or elite athletes, who by definition are in great shape and super-active. Athletes are trained to ignore signs. If you're tired, throw up, or are hot, you're meant to keep pushing through,' Ho warns.
Some countries have universal participation screenings for young athletes, where they undergo EKGs before being cleared to play sports. This isn't an easily scalable solution, though, and can also uncover incidental and harmless findings, leading to needless tests and worry.
Instead, Ho says, 'The first line of defense is parents or coaches keeping an eye out. If something seems out of the ordinary, have your child's doctor take a good family history and a physical. If they detect a murmur or an abnormality,' she says, successive testing might include an echocardiogram, stress tests, monitoring for arrhythmias, or the MRI that diagnosed Darryl Settles.
'Kids often have a hard time reporting their symptoms and don't have language or experience to describe it. Coaches and parents need to pay attention,' she says.
Owens also wants the parent community to understand grief. After Preston's death, Owens began working with the palliative care and bereavement group at Boston Children's Hospital and going to bereavement therapy. The treatment is targeted, but she points out that grief pervades every aspect of her life.
The Settles Family: Lisa, Preston, Taylor, and Darryl.
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'Grief doesn't stay only in the 'I lost my person' box. That grief affects all the other aspects of your life. … It infiltrates everything. Doing grief work and therapy has helped me carry it with me: It's like a lovely sweater that I wear all the time that I love — because grief is love. You can't have one without the other,' she says.
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As a physician, her personal grief has deepened her compassion for patients.
'You know, we think as parents about the gifts that we want to give our kids. In losing Preston, there are all these gifts that he has given to me — deeper compassion, being present,' Owens says.
And here's another lesson: She loves it when patients, or anyone in the community, mentions his name.
'For me, it was important to be open about our story. I think loss in general is really hard, and loss in the United States is handled differently than in other cultures,' she says. 'Grief is OK, and we should work on it and not just try and put it in a box under the table.'
Owens often thinks about small talk — 'How was your weekend? How was your vacation?' — and 'people don't really want to know. They want to hear that it's OK. I think we don't have a way to communicate and understand and receive people, or really be open when people say, 'It's tough,'' she says.
'When you lose somebody, you want to talk about your person. People love it when you say their name — because that means they're still around. When [patients] say, 'I'm so sorry to hear about Preston,' I'm like: 'Oh my gosh! You really remember that my son's name is Preston?' It's a little thing, but it's huge.'
Darryl Settles, a
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'I'm not going to be one of those guys who works until I'm 85. I went on a three-and-a-half-week holistic retreat in Vancouver after my son passed away. At that retreat, one of the things they talked about was: Nothing is promised. Retire when you can. Most people wait until they're in their 70s or even later to retire, and they want to do their bucket list, but their body won't allow them to. Enjoy life while your body allows you to do everything that you want to do. I've doubled down on that,' he says.
Learn more about the Preston Settles Memorial Fund at
Kara Baskin can be reached at
