Survivors and Families Lend a Powerful Voice

Survivors 1

Kaitlin Forbes, an SCA survivor, is featured in this award-winning publication from the SCA Foundation. "You Can Save a Life at School" can be downloaded at sca-aware.org/schools.

By Jenifer Goodwin

In efforts to educate the public about issues involving public safety, EMS can find no more powerful voice than survivors and their families. Whether the stories are tragic or joyous, the voices of those who have been touched by an accident or medical emergency speak more loudly than a PowerPoint or statistics ever could.

"The survivor advocates get the message across, whether it's to a new mom or to a hardened paramedic," said Josh Krimston, a paramedic and co-founder of EPIC Medics, which gives out a yearly award to someone within EMS who is going the extra mile in promoting safety in their communities. "They have that key that can unlock the person's emotions."

That sentiment was echoed by Chris Chiames, executive director of the Sudden Cardiac Arrest Association, which often includes cardiac arrest survivors in its "Heroes Recognition Program" for EMS professionals. "Survivors are an important visible and inspirational symbol that cardiac arrest is survivable and all of us have a role to play in responding," Chiames said.

And reuniting survivors with their rescuers can serve another purpose: motivating responders and reminding them in a vivid way that their work has value.

"What we are finding is that even hearing about a successful outcome generates enthusiasm through the firehouse or EMS station, for those on the call and among colleagues," Chiames said.

Staging a Survivor Summit

In 2003, then as the executive director for the National Center for Early Defibrillation, Mary Newman was looking for a way to raise awareness about cardiac arrest.

Newman and her team developed an idea to bring together those who had been saved by CPR and defibrillation with EMS responders. The National Conference of Champions and Survivor Summit, held in October 2003 in Washington D.C., had 42 survivors present (representing the 42 people who die every hour from SCA) ages 12 to 72, as well as 250 EMS personnel.
"The survivors wore red ribbons," Newman said. "It was just striking to see the number of survivors at every table and in the hotel elevators, mixing with other conference attendees, and to see the impact their presence had on EMS workers. There were lots of tears as survivors spontaneously shared their stories. For EMS workers, it made the conference so much more meaningful. They could see the outcome of all their work—that what they do every single day really does matter."

The early defibrillation project at University of Pittsburgh has since disbanded, but Newman has gone on to become co-founder and president of the Sudden Cardiac Arrest Foundation, also based in Pittsburgh.

One of the foundation's core goals is to build a National SCA Survivor Network—an online registry that has about 350 members from across the nation. The network serves multiple purposes. For survivors and their families, it provides a means to connect with others who have been through similar experiences and who may be dealing with some of the ongoing health issues that can result. "Most survivors return to their pre-arrest mental and physical status," Newman said, "but it is not uncommon for survivors to suffer short-term memory loss, especially in the days immediately before and after the event, or to experience issues such as depression and 'survivor guilt'."

Survivors willing to speak publicly have been called on to do media interviews or speak at community events. Others have become involved in state and federal legislative advocacy. Many survivors in the network have become involved in their own communities in public-access defibrillation efforts or in teaching CPR and AED use.

"We have members in nearly every state and territory, and the network is growing steadily," Newman said. "Often, survivors just want to get together with other survivors. Many survivors also want to give back and work to create awareness about cardiac arrest—to pay it forward. We are hoping to create an army of people  to share our mission, to raise awareness and save more lives."

Staging Your Own Survivor Summit

If you're interesting in staging a smaller-scale survivor summit in your own area, the following are some ideas for organizing it.
Determine your goals.  Are you interested in raising awareness about a particular issue, such as pool safety, traffic safety, bike helmets, seat belts, cardiac arrest or sports injuries? Do you want to reunite a survivor with a rescuer to help boost morale and inspire your EMS colleagues? You don't have to choose between the two—a survivor summit can achieve both.

Identify survivors.  Because of privacy laws, hospitals are limited in what information they can provide for you, although some may be willing to pass along your contact information to the patient. You may also find participants by keeping an eye out for media reports or doing a Google search for stories about survivors in your area. You may be able to identify and track them down that way. Sometimes, survivors reach out to EMS.

"Very often the survivors want to know who helped save their lives, and they take the initiative to seek out those involved," Newman said. "It's important to keep in mind that some people want their privacy and don't want to be involved with these things, but this seems to be the exception."

Consider including loved ones of those who did not survive.  Some families feel sharing their experiences to help other families avoid going through the same pain can bring them some measure of peace. "It's important not only to celebrate life, but also to remember and honor those who were lost," Newman said.

Plan your event.  Keep it simple by inviting your survivor to a low-key ceremony or a breakfast at the station. With their permission, invite your local media. If the save involved an AED, you may also want to invite the manufacturer's representatives. The company may be willing to cover travel expenses or any other costs involved with the event.

Start small and build.  Your first year, you may have only one survivor meeting with a few members of your staff. If you want to make your survivor summit a yearly event, identify other survivors throughout the year and ask them to join you. In time, word of your event will spread and you may have survivors contacting you.

Be prepared to be moved.  There are few experiences as rewarding for someone in EMS than coming face to face with survivors and their families. Make sure to have a box of tissues on hand—even your toughest guys may need to wipe a few tears.

For more information about the Sudden Cardiac Arrest Foundation National Survivor Network, visit sca-aware.org.

Austin's Story

On April 23, 2005, Cierra Sonetti was at a family gathering at her father's house when she realized she hadn't seen her 17-month-old son, Austin, in a while. After a frantic search, the family found him in the pool. Though several adults had been in the yard, he slipped in so quickly, and so quietly, that nobody noticed. A pool cover obscured much of the view.

Paramedics were able to revive Austin, but he had suffered life-altering, permanent brain injury. Now 6, Austin is paralyzed, blind and unable to speak or feed himself.

At 23 years old, Sonetti, along with her husband, is Austin's sole caretaker. The couple also have two other children. Austin's twin sister, Autumn, and a two-year-old daughter, Elle.

Though sometimes overwhelmed by the challenges of taking care of her family, Sonetti has become a powerful advocate for pool gates and water safety. She speaks to the media and at conferences—to anyone who'll listen, really—telling her family's story and talking about the importance of supervising children around water.

"Every time I hear about a child who has drowned on the news, it kills me," said Sonetti, who lives in Las Vegas. "It is so preventable.  These poor little babies are toddling around, and we let them down. If we keep our guard up, these kids could have long, full lives."

About a year after her son's near drowning, Sonetti heard about another drowning in her area and contacted the media. "I asked if they could come over and share my story in hopes of preventing another accident," she said. "I feel if I can get my story out there, it will save a child, so it's something that I have to do."

Survivor 2She has since participated in many other water safety efforts, like the special event pictured. She has done public safety announcements for her local fire department, speaks at the Safe Kids Coalition's annual awards ceremony and sits on her county Department of Health's Pool Barrier Committee.

And Sonetti doesn't wait for official engagements to share her story. In Target last spring, she got to chatting with another shopper. Sonetti mentioned her son was in the hospital and had been for several months.

The women in the Target had come to buy furniture. "She called me later and told me, 'Cierra, I didn't buy furniture. I bought a pool gate'," Sonetti said. "I think when people can actually see for their own eyes what really happens, it changes them."

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