Episode 55: Living with Hypoplastic Left Heart Syndrome ft. Kasie Marek
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- Опубліковано 20 лют 2023
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As we celebrate American Heart Month, heart mama and two-time cancer survivor, Kasie Marek, speaks openly and honestly about what it’s like to have a son with HLHS. We have a beautiful discussion about the realities of caring for a child with a serious and rare heart condition.
In this episode, we chat about:
- What is Hypoplastic Left Heart Syndrome (HLHS)?
- How does HLHS affect a family: emotionally, logistically and financially?
- What are the treatment options available for HLHS?
- What are the effects of a heart transplant on a family?
- What’s the best advice for a fellow heart mama?
Kasie Marek is a medical mom trying to figure it all out, one day at a time. A two-time childhood cancer survivor who entered the “nurse" mom world after her first-born, Noah, was born with Hypoplastic Left Heart Syndrome (HLHS). Now, she’s trying to navigate the everyday life of medical to-do lists, while still being a MOM, WIFE, and prioritizing self-care.
Connect with Kasie:
Instagram: / laughingafterlemons
Facebook: / kasiehelpzkidz
Websites: www.laughingafterlemons.com
www.khkidz.org
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Hello, I just wanted to say that I just found and appreciate your channel and community. I was born with hypoplastic left heart and don't often think about that fact anymore. I looked it up and found this video, and just wanted to share my story so other kids and parents can hopefully feel a little better. I am 21 about to be 22 and I am able to exercise with weights and I have taken college courses. I've had the Norwood,the fontan1 and 2 and an aortic replacement surgery. Noah's condition is worse than mine but I sincerely hope that he lives to the fullest and has a successful transplant.
What a great testimony! I'm so happy you found us. I hope many families find hope in your story.
Aww man, this story touched my heart. My wife and I have custody of our grandson who was born with HLHS and we are going through all the same events. Our GS is 4 months now. My wife needs support, because somedays she just can't handle all the things that come with it. God Bless both of you.
Just want you to know that my nephew was born with HLHS. He is 21 now and is going on the transplant list to get a new heart. There is hope
Why does he need transplant
His heart is failing him now. He is going to hospital next week to wait for a heart@@tylerpuckett7858
My 3-day-old baby was born with HLHS I'm currently torn apart and I'm in a decision point right now and I'm not sure i wanna put the baby through this stress and painful procedures.
I hope i com back here years later and be proud of myself that i did the right thing.
My daughter passed away from this condition, hers was pretty complicated. I am still trying to get back on my feet from it all. It is inspiring to hear other people stories, there’s no “fixing” hlhs…just preceedures that hopefully extend time.
My deepest condolences for losing your precious baby. I hope God gives you the strength in this challenging time.🙏🙏🙏
I'm 24 n have hlhs...