Jeffrey - born 1996On June 6th, Jeffrey was born. He was a very sleepy baby and when he was 10 days old, he went into respiratory distress and was air flighted to a local Children’s Hospital. After being diagnosed, we were presented with the three options - transplant, 3-staged surgery or comfort care. Based on how it was presented to us, we chose the third option and took Jeffrey home to die. Fortunately, we had friends and family who recommended that we get a second opinion from Boston Children’s Hospital (2 hours away). My husband phoned and spoke with Dr. Jonas who asked us “why wouldn’t you do the surgery when the success rate for the Norwood was 75%?” After hearing hope, we basically hung up the phone and drove to Boston.
The photo below is at Jeffrey's college graduation in June 2017
Story by Jeff's mom, Lenore. After their experience she founded Little Hearts in 1998 (over 4,000 members nationwide!)
The remainder of this story is written by Jeff
UPDATE (October 2017)
I have twenty one years of CHD experience with me, and to be honest I rarely think about it. Of course I take my meds every morning but that's just routine at this point. The surgeries and procedures are all behind me and I feel great. I graduated college in June of 2017 and I'm eager to move on and make the most of my life.
The most challenging aspect of having HLHS is other people's perception. A few weeks ago I was helping a friend move. No more than 10 minutes goes by then I hear in the distance "What are you doing? Don't you know he has a heart problem?". It's the hardest part of having a heart condition, when others think you are incapable. Unfortunately this happens often and every time I tell them that I can do whatever they can do, in the most polite way of course.
I do my best to eat healthy and stay in shape for the sake of my heart and I'm very thankful for the life I have today and want to say a special thank you to the doctors who had hope in me. Dr. Freed who has monitored my health since day one and continues to do so when I went for my annual appointment last month. All looks good! Not to mention Dr. Jonas, the surgeon that literally saved my life. I don't know what he's doing these days to be honest but wherever he is I hope he's enjoying life, he certainly deserves it.
I am living life the most normal way I know how and my CHD will never define me or my limitations.
Kind regards, Jeff
Zayden, born 2016
Sarah, born 1990