Kellen's Heart Story - HLHS

Before Kellen was born, he was diagnosed with hypoplastic left heart syndrome (HLHS). Watch the video to hear how Kellen's family went from devastation to hope, thanks to the care he received at the Cardiac Center, and to see how Kellen is doing today. Read more about Kellen's journey.



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.

Topics Covered: Hypoplastic Left Heart Syndrome (HLHS)

Related Centers and Programs: Cardiac Center