Maeve, 17, likes to keep busy. In March 2018, she was starting an exciting but stressful school week with both softball tryouts and play rehearsals.
About 20 minutes into softball, she collapsed without any apparent cause. First, her coaches and classmates thought it was a seizure. But then her trainer couldn't find a pulse: Maeve was in sudden cardiac arrest.
Fortunately, Maeve’s coach and trainer had a portable automated external defibrillator (AED) on hand — more importantly, they realized they needed to use it quickly. Within 90 seconds, Maeve’s coach had shocked her heart and began CPR.
"It was a normal day, and then I got a call: ‘Maeve collapsed, she’s not breathing, they’re doing CPR. You have to get to the hospital.'" recalls Marguerite, Maeve’s mom. "I was driving to the hospital with my sons, praying she wouldn't be dead when we got there."
‘Get her to CHOP’
More About Sudden Cardiac Arrest
By the time EMTs arrived, Maeve had been down 6½ minutes; her heart was not beating and she wasn’t breathing on her own. Without oxygen, her skin had turned blue. The training staff gave her two shocks with the AED and the EMTs administered two more before they got a pulse and she began to breathe.
Maeve was transported first to a local hospital. She had poor muscle tone, low pulse ox, and her lungs were filling up with fluid. "I was worried about brain damage," Marguerite says. "My sister-in-law is a doctor and she told me: ‘You need to get her to CHOP.'"
Thanks in part to parental advocacy, Maeve was airlifted to CHOP where she was immediately seen by Maully J. Shah, MBBS, an attending cardiologist in the Cardiac Center.
Search for the cause
By the next morning, Maeve was waking up, but confused about where she was and what happened. She had little memory of the incident. While Maeve focused on recovering, Dr. Shah and other doctors in the Cardiac Center tried to figure out what caused her cardiac arrest — and what they could do to ensure it never happened again. During the next 10 days, Maeve had approximately 100 tests — 40 on the first day alone.
Those tests came back with generally good results, and Maeve was more alert with time. The tests ruled out a structural defect in her heart. Next, CHOP’s doctors looked at possible dysfunctions in her heart’s electrical rhythms using a cardiac stress test and genetics testing.
Treating the whole patient — and family
Maeve was the only teenager on a floor filled with young children. But she says she never felt talked down to her or overwhelmed. "They respected her age," says Marguerite. "Every person who came in talked to her directly. They treated her like an adult, but in ways that didn’t make it scary."
Maeve says Dr. Shah and the other CHOP staff found a perfect balance for communication. "Everyone was great. They’d stay for 15 minutes or 30 or 90 — however long I needed for them to answer my questions," Maeve says.
“Because Dr. Shah always had a plan, but was also so comforting, it never felt like this was a thing happening to me. They always gave me things I could do — even if it was just eat, rest or read this brochure. ”
The medical staff parceled out information in digestible pieces, and let Maeve’s mom deliver some of it when it was appropriate to do so. "It was nice to have times where my mom could answer my questions and we didn’t have to do it in a room full of people," Maeve says. "And everyone was so friendly — even the janitors or other staff would pop in and make sure we all ate. Some of the nurses would chat with me about TV. I felt like they took care of my whole family, so I had one less thing to worry about."
Implantable cardioverter defibrillator
As Maeve grew stronger, Dr. Shah talked to her and her family about how they could best avoid another sudden cardiac attack. The physician suggested an implantable cardioverter defibrillator, a device that would help regulate Maeve's heart rhythms and keep them within normal range.
There are two types of ICDs and both were medically appropriate for Maeve. Her parents and doctors let her make the decision. “It was a tough call to make. Doctor Shah said both will do the job, but the doctors won’t help you make the decision. I know that’s their job, but it’s still frustrating," Maeve recalls with a chuckle.
She eventually opted for the smaller of the two, a subcutaneous ICD for two main reasons: It’s less invasive to the heart since the lead is attached to the outside of the organ, and the position of the device was less likely to interfere with her favorite sports: softball and volleyball.
The SICD has only recently become an option for children because it was initially too large to be safely placed in the torso of a child. However, technological improvements have decreased its size and made it an option for children as well as adults. Maeve was one of the first children to receive the device at CHOP.
Thirty hours after her implant surgery, Maeve was home for the first time in 11 days.
A bright future
Less than a year after her sudden cardiac arrest, Maeve was cleared to start playing softball again. She has surprisingly few limitations on what she can do. "Basically, the only thing I can’t do is the rope climb in gym class and no contact sports," Maeve explains.
She's also had to adjust to some minor side effects from the beta blocker medication she takes to help regulate her heart rhythms. At times, she feels overheated or faint.
"You would not know there’s anything different about her," notes Marguerite. "[The only way] she has changed is that some stuff she used to complain about she doesn’t now. She has a real appreciation for what matters; we all feel that way. When you go through something like that it changes you a bit, but she is still happy-go-lucky."
There are a few other changes. Maeve’s genetics tests were inconclusive, but both her brothers had unusual results on their cardiac stress tests and now take beta blockers too. And the family has a portable AED now — just in case she or her brothers has a cardiac arrest.
“That’s the beauty of being at CHOP. We are so lucky to have these resources in our area.”