One in every one hundred newborns has a congenital heart condition. Henry, born in 2002, was one such child. Diagnosed with Hypoplastic Left Heart Sydrome, Henry underwent several surgeries to attempt repairs only to need a heart transplant at the age of five.
In the years of waiting rooms and pediatric intensive care units, Henry’s mother, Erin, began to journal. While she desperately wanted to know what had gone wrong with her son’s heart, she was also consumed by how devastating this experience had been on her family. With time, Erin began to understand there were few resources that helped parents cope with their heartbreak, fears and chronic stress.
Henry: A Hypoplastic, Congenitally Defective, Transplanted Tale is partly their family’s story as well as a coping guide for other heart families. This book is written from a mother’s perspective: Sometimes tearful, sometimes irreverent but ultimately of being transformed by sorrow and miracles. There are also discussions of partnering with medical professionals, fundraising, changing marriages, and stories of other heart families. All proceeds from the sale of this book go to benefit the Malley & Henry Fund.
“Any parent raising a child with a critical/chronic illness deserves to know how others coped. These stories aren’t opportunities to gloat, whine, rage and strike fear. They are just the gift we give another when we learn we are not the only ones.”
(From 2002 and our first stay in the PICU)
But Henry was awake today and looked around for a good ten minutes. A friend came by and stroked his hair, spoke to him and he stared at her for a long time. Never has with me. Just moments where he looks at me and then looks away as if he’s more disappointed in me than he can bear. I’ve never felt more like a failure.
I’ve had too much time on my hands. Tethered only to my breast pump, my son’s gripping fingers. Severed from my home, Ned, Ian and Gwyn.
Each day Henry goes through too much — an IV, treating his wounds, adjusting his central line. I’ve lost count how many times these things seemed necessary. Henry screams in silence because his vocal chords are paralyzed to accommodate the ventilator. Then he passes into fitful sleep. Never too deep because I think he is already wise enough to know someone will be back to hurt him again.
Inexplicably, children in the neighboring glass cubicles are gone in the morning. Discarded space with medical debris on the floor, the beeping machinery silenced. Did they get to move downstairs or did they die? Can I be happy for another child who is well onto her road to recovery or have I become so traumatized that I can only rally for Henry?
(From 2007, waiting to hear we have a heart donor)
The pager arrived from St. Louis Children’s. Two things immediately happened. I felt nauseous and I had to snatch it out of Henry’s hands because he wanted to dismantle it. Maybe he sensed that little black box had evil designs on him.
How did I get here, holding a beeper that holds my kid’s life in its wiring?
I wear the pager all the time, except when I shower. Then I set it on the back of the john and obsessively tear back the shower curtain to see if it has gone off. This neurotic habit ensures that I can only shave one armpit per shower (forget shaving my legs). At bedtime, I check to make sure it is working and then I wake up every hour to check again. I have invested probably fifty bucks in replacing the batteries. I would never let them run low.
I have so much left to do. I need to have our bags packed. I need a child care plan for Ian and Gwyn. All of the insurance has been handled, we’re preapproved for a new heart. But I still need to come up with a lot of money for our travel, lodging, food and keeping the house running while I am gone.
I’ve made arrangements with the medical transport jet that will fly us to St. Louis once a heart arrives. The guy I speak to is funny, maybe because he has spoken to so many hysterical moms. He reminds me that the plane is small and so that our luggage is limited. And that, by the way, no matter how badly I crave tranquilizers, he discourages parents from popping pills before they board. Apparently, there will not be any cocktail service either. Believe me, I asked. He asks me several times if I know where the small business airport is. I vaguely know that part of town. Make sure, you know how to get there and that you drive calmly and safely. Sure buddy, just like catching a flight to Acapulco.