Teen Makes Sports Comeback After Infection Causes Heart to Stop Beating

Podcast Transcript

Kyle: Hey everybody welcome to The Comeback I'm your host Kyle Michael Miller. During this episode we're talking with 15-year-old Sophia Pecjak who is back in the game after being sidelined by a virus that attacked her heart. Sophia's mom Carol is also here along with Cleveland Clinic Children's cardiologist, Dr. Gerard Boyle. But first here's Sophia in her own words.

Sophia: My name is Sophia Pecjak. I’m 15-years-old and I live in Mentor, Ohio. When I was 10, my mom took me to the hospital because I wasn't feeling well and my heart was beating really fast. I went into cardiac arrest twice and the doctors saved my life. They said a virus attacked my heart. A machine helped my heart pump in the hospital for five days. After that, my heart got stronger and I could go home. I wasn’t able to play sports for about a year and that was really hard. Now I play soccer and basketball again and I can't wait to get on the field this spring.

Kyle: Sophie, Carol, Dr. Boyle, thank you so much for joining us.

Dr. Boyle: Thank you.

Sophia: Thanks for having me.

Carol: We're happy to be here.

Kyle: It's good to see you guys. Sophie, how are you feeling today?

Sophia: I feel good.

Kyle: You feel good. Before we jump in to your story, you went through a lot five years ago, but take us back to when you were 10-years-old. What were you like as a kid? What was your life like back then?

Sophia: My life was very exciting. I had something every day whether it was for school or sports. I was very energetic and I didn't like to take time off. I was pretty healthy, too!

Kyle: Is that true mom? She was energetic, always on the go?

Carol: It’s true. Energetic. Non-stop movement.  She used to roll around if she wasn't physically in an activity.  We'd be like, ‘okay, we’re in off season, we got to get her doing something’.

Kyle: Carol, did you have any idea that something was wrong? Any inkling?

Carol: I knew something was going on for sure. As a mother, I knew aside from not feeling well, something just didn't sit well with me. But no way did I know it was as serious as it was.

Kyle: Sophie, will you take us back to that day in September of 2014. You weren't feeling very well. What was going on?

Sophia: I was sick the week before and I just wasn't getting any better. I could feel palpitations in my neck and my throat. On a Wednesday I had stayed home from school and I lost vision in my one eye so my mom knew to take me to the hospital.

Kyle: You guys went to the pediatrician first, right?

Carol: We did. On a Monday we went to the pediatrician. She wasn't real sure what was going on but she did do an EKG and said it was abnormal. Then we were waiting for some other labs to come back and such. At one point they called and said to schedule with the cardiologist but we weren't able to get in until a Thursday. As Sophia said, on Wednesday she lost some peripheral vision in her eye and we're like, ‘okay, I think it's time to head there’.

Kyle: You guys went to the E.R. at that point?

Carol: We did.

Kyle: They did another EKG. What were the results of that test? Do you guys remember?

Carol: All I know is that in the E.R. they told us that it had changed since Monday so they were going to take her to the cath lab.

Kyle: Dr. Boyle, what was going on with Sophia when you first saw her?

Dr. Boyle: Fortunately for Sophie, I think we've seen a lot of this and we had recently seen a patient very much like Sophie. Her EKG showed abnormal rhythms. Her ventricle, a lower part of her heart, was beating abnormally and that gives us a bizarre look on an EKG and they were more and more frequent. Given the history that she had been ill for a couple of days, and now all of a sudden she's having palpitations and we see this change on the EKG, our first instinct is that she's got myocarditis. So we took a couple of pieces of the heart and measured the pressures. Throughout the case she was having these extra beats but her blood pressure was stable and her rhythm was fairly stable. But we had a bad feeling that this was not going in the right direction and it was not going the right direction quickly. So we brought her right from the cath lab up to the ICU to initiate treatment for myocarditis. If we were wrong, we could stop that treatment when the biopsy came back, but the thought was that we needed to get started right away.

Kyle: What is myocarditis and how does somebody get this condition?

Dr. Boyle: Myocarditis is an inflammation of the heart. The body is usually reacting to a virus that it had maybe a week or two weeks before. The immune system starts to fight that virus. It's really the body is fighting itself and is attacking the heart itself. Our treatment is to try and calm down the immune system using a number of different medications.

Kyle: Sophie was active, healthy, played a couple different sports. Is it common to see somebody like Sophie have myocarditis?

Dr. Boyle: Common? No. It happens and it's so random. It's very rare that the cross-reaction between the virus and the immune system cross reacts with the heart. But it happens and it can happen to anybody at any age.

Kyle: Carol, were you shocked when you found out that Sophie had heart failure at 10 years old?

Carol: Absolutely. When they came in and told us that, I think when I look back, I'm not sure how much I heard after that. It was kind of a numb feeling and scared doesn't even give it an accurate description.

Kyle: How do you process that as a mom? You're in the hospital room with your daughter and you're not sure what's going on. How did you handle that?

Carol: Honestly, my husband and I are looking each other in shock trying to listen to the information that was being given to us. We were told that she would be in working with the heart failure specialist. To me, all I could think was that means she's going to die. That was my first thought.

Kyle: Carol, there is a moment that shook you to the core quite a bit. It was when you guys were in the hospital. Can you take us back to that moment?

Carol: Right after she got out of the biopsy I was standing next to Sophia's bed and talking with her. She was coming out of sedation and there were several doctors and nurses standing at her doorway. At one point she just slumped over. Everyone came in and Dr. Boyle started doing CPR on her. Although I realize she was in cardiac arrest, again all I can say is it was a state of shock. Also realizing how grateful I was watching the organized chaos going on in the room to help her to bring her back.

Kyle: Dr. Boyle you were there at that time and there were a couple other caregivers and doctors there.

Dr. Boyle: My nurse transplant coordinator Colleen Nasman, who works very closely with me, was standing at Sophie's bed on the other side. She just looked at me and I knew that this was going in the wrong direction so we all rushed in. Actually, Dr. Aziz and I rushed in and Dr. Stewart, our surgeon, ran to get his team ready to support her circulation.

Kyle: Dr. Boyle, Sophie mentioned that she was on ECMO. Can you explain what that is and how it is used?

Dr. Boyle: ECMO stands for extracorporeal membrane oxygenator. It means outside the body we’re able to oxygenate the blood. It's used in a number of instances. We use it most often in instances where the heart fails acutely.  It can be used immediately out of the operating room or in the operating room. After a big heart surgery, if the heart doesn't recover right away, you put them on it. This is essentially cardiopulmonary bypass where we're doing all the work of the heart and the lungs. It's used in the post-operative period and it's used in the acute decompensation period when someone comes in with myocarditis or bad cardiomyopathy and they come in a little bit too late. We're able to cleanse the blood, support the body, give oxygen to the organs, most importantly to the heart and to the brain, and to allow them to recover until the heart takes over again. While we were doing compressions on and off we were moving Sophie’s bed and all of her medicines to a larger room where the surgical team was already setting up the ECMO circuit. Sophie looked up at one point after I did a couple of compressions and said, ‘I love you’, and everyone on the team lit up. I said, ‘I love you too’. She looked at me said, ‘Oh no I was having a dream.  I thought I was saying goodbye to my father at the door.’

Dr. Boyle: So back to ECMO. While we were doing compressions the surgical team put in what are essentially giant IV's. This machine was doing all the work for both her heart and her lungs.

Kyle: At that point you thought that she was going to have to have a heart transplant.

Dr. Boyle: You have to think that if the rhythm has deteriorated to the point that she's having cardiac arrest, we're going on ECMO, we have to start thinking about heart transplant.

Kyle: But then a couple days later her heart started to recover.

Dr. Boyle: Yeah.

Kyle: How often does that happen?

Dr. Boyle: The good news for myocarditis is that it’s a fairly common occurrence. Myocarditis comes in a couple of varieties. The ones that go into fulminant myocarditis recover faster. We were very hopeful that this would be that, and the biopsy showed that this was fulminant myocarditis. We're hopeful that this would recover quickly and we were very gratified to see it start to come back.

Kyle: Carol, you had support from your family, friends, your church, from strangers. How much did that support mean during that time?

Carol: It was critical to our well-being for sure. We felt the support. Also with Sophia's older brother and sister, we knew that they were being well taken care of while Michael and I were at the hospital with her. The prayers uplift the heart. We needed that.

Kyle: What was the recovery process like for you?

Sophia: It was hard when I knew what was going on. I was awake all the time so it was boring just sitting in the rooms. I missed my home, I missed all my friends, and I even missed going to school.

Kyle: We know that you were determined to get better.  I also heard that you hung up your jersey in the hospital room.

Sophia: Yeah.

Kyle: How did that help you stay motivated?

Sophia: That just reminded me that when I get through this I get to go back to playing soccer and basketball. It was a good reminder to look at and to know that I had something to go do after all of this. 

Kyle: Dr. Boyle didn’t let you play for a year! How could he do that, right?

Kyle: Was that year pretty tough for you?

Sophia: It was. It was hard especially because I've always played sports so I didn't really know what to do with myself. I would go sit at the practices and watch for a long time, which was good. But it was hard not being able to go and play.

Kyle: Do you remember the first day that you were able to play sports?  When Dr. Boyle cleared you and you got that okay?

Sophia: I remember leading up to it because I was able to start doing a little stuff at practice. I could do skill work but I couldn't get my heart rate up too high. Then I kept going up and up and it took about another year to get back to normal after not playing

Kyle: Mom, when you look at Sophie today, isn't it amazing how far she's come?

Carol: It is amazing. Trust me, especially being the mother of a teenager, sometimes when I'm frustrated there's always that in the back of my mind.

Kyle: You don’t frustrate her do you?

Sophia: Never. I’m the perfect child.

Carol: I think that’s part of the gift, to remember how valuable life is and what a gift she is to us. It’s pretty cool to look at her and say I can't believe that's where you were.

Kyle: Well we're going to play a quick game called Go Fish. We have a fishbowl in studio so Sophie, if you want to take the lid off the fishbowl we’re going to give each of you a question. Sophie, do you want to go first? Pick a question out, read it to us, and then you can give us your answer.

Sophie: What would you like others to know about my myocarditis? I think your mind and your mental state plays a big part of it. To not think you're going to die during this. Just to stay positive during it will make a big impact. I feel like that was a big part of it. Especially with my family and with all the support that we had, it helped a lot on the whole mental part of it.

Kyle: Mom, do you want to pull one? There's no trick questions in there.

Carol: What's one life lesson learned from this medical journey? Hmm, just one?

Kyle: You can do a couple. 

Carol: Well one for sure is to trust your instincts especially as a parent. I know that was a big part for me because I knew something was going on earlier than probably medically indicated. That was very important for us because I know we talked about it several times that she was in the right place at the right time for all these pieces to fall into place to help her recover.

Kyle: All right Dr. Boyle.

Dr. Boyle: What advice you have for someone trying to stay positive during a health scare? I think it's important to be informed. When you can put yourself together, think about the choices and the options that are being discussed with you by the medical professionals. If you don't like the answer, ask the question again. If you don't get the answer you want, maybe it’s time for a second opinion. You need to trust your caregivers and their surrounding and use your maternal instinct to say that this is the right thing. Once you have that, staying positive becomes a lot easier. Sophia put it as well as it could be put, having a positive mental attitude really is almost equally as important to some of the medications that we're able to give these patients or the treatments we do. I fully believe that we heal ourselves.

Kyle: We are just about out of time. You guys have any closing thoughts today or anything else to say?

Carol: We're grateful for Dr. Boyle, Dr. Aziz, Dr. Stuart, Nurse Colleen, and the dozens of other people that helped Sophia come through this healing journey.

Dr. Boyle: You have no idea what she did for our team. When she was still on ECMO and still intubated, she was still smiling. She's the only patient I've ever had that asked for a selfie while she was intubated.

Dr. Boyle: Her positive attitude from the get go helped our team. We have some difficult challenges and we're just humans too. Through that illness Sophia helped us. You have no idea how, when she was coming back to clinic, we looked forward to it. ‘Oh Sophie's coming in this week.’ We all looked forward to it. It was something that lifted our spirits. Nurse Colleen was almost giddy whenever Sophie was coming because we have so many sad stories. When you have somebody that is so positive, it really helps the whole health care team.

Kyle: I think if you talk to anybody who has met you or has cared for you they always say, ’Oh Sophie, we love her! She's great, she’s so positive, she has a great smile.’

Dr. Boyle: Yeah absolutely.

Kyle: Well thank you guys so much for coming in and sharing your story. We really appreciate it.

Sophia: Thanks.

Carol: Thank you, Kyle.

Dr. Boyle: Thank you.

Kyle: Thank you everybody for taking the time to listen. You can find additional podcast episodes on our website clevelandclinic.org/podcasts, on iTunes, SoundCloud, Stitcher, and Google Play.