Cardiac Patients Tell Their Heart Stories

Kellen's Heart Story - HLHS

Kellen Jackley, Sister: My name Kellen. My heart has a story.

Stacie Jackley, Mother: Thirty-two weeks into our second pregnancy, we found out that our baby boy would be born with Hypoplastic Left Heart Syndrome. HLHS is a severe complex congenital heart defect that is fatal without immediate intervention after birth. It requires a minimum of three open heart surgeries, and we were just totally devastated and upon receiving the diagnosis and our whole world just came crashing down in that moment. We set up an appointment for a consultation with CHOP in their Fetal Heart Program. And we spent a great deal of time with them that first visit. And they thoroughly explained HLHS to us and what the three surgeries would entail. And for the first time, we were able to understand what it was. And we had hope. And we were able to breathe for the first time since receiving that devastating diagnosis knowing that our son could live a normal life and we knew in that moment, right then and there, that we were in the best place to give Kellen the best chance at life.

Tommy Jackley, Father: From the minute Kellen was born we were involved in all the decisions and communication surrounding his care. CHOP's family-centered care approach made us feel like we played the important role in every aspect of his care from when he was born, all the way through his surgeries so far. The support we got from his medical team and everyone else involved at CHOP was astounding. Every doctor, nurse that was taking care of Kellen truly cared about him. That was how we felt. It wasn't just their job, they truly, truly did care about him. This is the main reason why we chose CHOP. That right there validated it for us that we made the best choice in coming to CHOP.

Stacie Jackley, Mother: Kellen has had the first two stages of the surgery, the Norwood and the Glenn. And he'll be having the third, the Fontan, this Spring. And he's doing phenomenal. And we have no doubt that that is a direct result of his expert care team at CHOP. They're like family to us. I don't know where we'd be without them. I don't even want to think about it. They're just phenomenal. We are very lucky. Very ,very lucky.

Kayla, what do you think about CHOP?

Kayla Jackley, Sister: I think about CHOP that CHOP beautiful and I love CHOP, and they take care of Kellen's heart.

Stacie Jackley, Mother: Yes, they do.

Tommy Jackley, Father: Want to say bye?

All: Bye.

Tommy Jackley, Father: Say thank you, bye. Thank you, bye.

Kayla Jackley, Sister: See you later.

Jason's Heart Story - Single Ventricle Defects

Jason Shush: Hello, I'm Jason Shush, and my heart is the story. So on the glorious day, September 4, 1999, I was born. Yep. Came home, three days later, you know, normal baby stuff. Probably cried, a lot. So then a nurse came and they said, "Hey, something's wrong." So they took me to the hospital. And they realized I had congenital heart disease. So they realized I only have one ventricle. You're supposed to have two atriums and two ventricles, but I only had one. So I had 3/4 of a heart. So at CHOP, when I was 10 days old I underwent my first of four major surgeries: A Norwood 1 reconstruction. So six months later I come back, and boom – I have a Hemi-Fontan surgery. It's not much. So then 3 years later I come back and boom – another surgery. It's like a "fund a vent." I don't know. It's some doctor word but – so I had to do that. Though it sounds pretty serious it's not that bad. Lastly, when I was 4 years old I had a chamber pacemaker surgery. The pacemaker it's kind of like a little defibrillator in your body that will electrocute you when my heart stops beating. So then when I was 4 years old, I got sent home after the surgery, doing like normal 4-year-old stuff and the only thing I need to do was just visit. First it was probably like every month. And then when I started kindergarten, every three months. And then eventually as I grew older and older, every six months. So now I'm just a normal 14-year-old boy, video games, friends, sports, usual 14-year-old stuff. So if you're in this situation, don't worry. The staff is great and the best part is you also get to live your life as a normal boy while still being connected to the hospital, almost like a family. So thank you for listening to my story.

Julia's Heart Story

Julia: Hi, my name is Julia and my heart has a story.

Jannette: Hi, I'm Jannette, I'm Julia's mom. And our heart story began when I was 20-weeks pregnant with Julia. We learned that she had a rare and serious congenital heart defect at that time. The news was a shock to us. We were not prepared, but we were so fortunate to be connected with a cardiologist at CHOP the same day she was diagnosed. And that doctor spent hours with us answering our questions and helping us prepare for what was to come. What we didn't know then, that we do know now, is we didn't just get connected with doctors who would help with Julia's care, but we became connected with a network of healthcare professionals, doctors, nurses, nurse practitioners and therapists that would all be a part of our lives from that day forward. And they're still a part of Julia's life and our life to this day. It's a hard journey. There's some unexpected bumps and everyone encounters them. Every child is different so you don't know what those are. What I can share with you as Julia's mom is that the folks at CHOP helped us every step of the way sit down and figure out what was the right decision for her and our family. And we wouldn't trade it for the world. If I would recommend to any parents facing a similar situation, is to ask as many questions as you need to. Connect with those professionals whenever you need to. They're available 24 hours a day, 7 days a week and they'll help you on your path as well. Thank you, Children's Hospital.

Zoey's Heart Story - Coarctation of the Aorta and VSDs

Jacquline Hardy: Can you show mommy where your heart is on your chest? Very good.

This is Zoey Hardy and my name is Jacqueline Hardy. And this is Zoey's heart story. We found out when Zoey was six-days-old that Zoey had a heart condition. We brought her to a South Jersey trauma center where she was diagnosed after an echo with a heart defect. And with that heart defect we were told that she would have to be… All right. We were told that she had to be helivaced to Children's Hospital of Philadelphia.

When we arrived at CHOP, we walked through the atrium and we had so much just hope walking through the atrium alone because it was so cheerful. And we walked upstairs to the 6th floor to the CICU. They told us the term that would change our life forever which was… we were told that Zoey had congenital heart disease. She had coarctation of the aorta and multiple VSD's. We met with the doctor and he explained that Zoey needed to have heart surgery but she was too sick to have it.

So three days later when Zoey was 10 days old she had her very first heart surgery. It was very, very hard to go through but we were very lucky that Dr. Thomas Spray performed all of her surgeries, including her first one. Zoey also had a stomach surgery that was done and that stay took four weeks, actually a little over a month it happened.

So after her first six weeks there, we brought her home and it was a very trying time for us. Zoey did very, very well.

She did have her second open heart surgery when she was a little over a year old. Dr. Spray also did her second surgery. She did extremely well. When she first woke up she gave us this big, big spunky smile, as I call it. And with that, we knew that everything was going to be OK.

And CHOP's motto is "Hope Lives Here." Not only does hope live there but CHOP does something amazing, they put hope in my heart, and it will forever live there. And I don't think anybody could ever give you that piece of mind. So any family that is being faced with the diagnosis of congenital heart disease, my biggest thing is, is that you have to have hope. Children's Hospital of Philadelphia is the best hospital that's around. There is no other place like it.

Zoey is the biggest part of our life and right now as you can see, she is a vivacious 2 1/2 year old. She talks. She walks. She runs. She does everything that any other 2 1/2 year olds would do. And I owe that to CHOP. Because CHOP saved her life.

This is a child that we were told wasn't supposed to make it, and she did. She beat the odds. So don't you ever give up hope because that little kid that's right over there, Zoey, right over there, that you can see. She is very, very active and very happy. And she loves everybody. So thank you for listening to Zoey's heart story.