HLHS Survivor
Here's my 12 year old.
Why is this picture so special? Because when he was 10 days old, we took him home from a Children's Hospital to die.
When Jeffrey was born, he was over 8 pounds and showed no signs of having anything wrong with him. The only thing he did do a lot of was sleep and we were told that was normal.
Ten days after his birth, he went into acute respiratory distress and was taken by air ambulance to a local children's hospital. That is when we learned he had Hypoplastic Left Heart Syndrome (HLHS), a severe congenital heart defect.
We were given three options - heart transplant, 3-staged open heart surgery or comfort care where there's no medical intervention and the child dies.
Based on what was presented to us, we chose comfort care and took Jeffrey home to die. We were under the impression after hearing from the doctors that even if we gave him a chance with the staged surgery, his chances of suriving all of them weren't good and he wouldn't have a quality of life. We were given little to no hope of him making it.
What we did learn after obtaining his hospital records was "he was noted to be at the low risk of the spectrum of HLHS" because of the size of his aorta. We later learned that this defect was very controversial amongst doctors regarding the comfort care option. It was an understandable option that was offered 15-20 years ago when the success rate for the staged surgeries was low, but why now when the majority of the children are surviving the 3-staged surgeries? These were two things we didn't know when he was diagnosed. Two things not told to us to make a sound decision regarding the life of our son.
Jeffrey had the first of the three open heart surgeries when he was 18 days old and his last a month before he started kindergarten . Today he is a happy, healthy and active 12 year old boy who does what little boys his age do! Does he have quality of life?
He's aware of his story and has asked "mom, why didn't you want to help me when I was a baby?"
Before starting Little Hearts, I took a group photo of kids with HLHS. I needed to do it for several reasons but the main one was to show that there was hope for HLHS. We now take the pictures of HOPE (CHD and HLHS) at our annual picnics and we refer to these photos as the "Picture of HOPE" . HOPE/HLHS 2002 was published in CHOP's HLHS Textbook. To see our more recent ones, visit the PICNIC link on www.littlehearts.org. You can also read more about our beginning in a 1999 newspaper article
If you are expecting or have a child with a heart defect, please visit our website. If you would like to receive any of the support services we offer, send in your membership form today!