P.S. Forever Thankful

On a more serious note, I’m sure many of you are craving, just like we are, more details about the origin of Hope’s donor heart. We are given extremely little information about the donor out of respect for the grieving family. We don’t know how old the child was, the sex of the child, the location of the heart, the mode of transport to Children’s or any other identifying details. Apparently, there have been some families in the past that have searched for the donor family the same day of transplant and tried contacting them, which is obviously completely inappropriate and disrespectful of the grief that family must be feeling, however well-intentioned. The proper communication process works much like adoption. Both parties need to communicate to the neutral third party, the organ donation group, that they are open to communication. Only if both families submit agreement are they put in touch to communicate directly. We’ve been warned that there is a good split between families that are comforted by communicating with the organ recipient and those that find it too painful, so we shouldn’t get our hopes up that there will be a joyous reunion with the donor family. On the chance that they don’t wish to communicate, John and I thought we’d share our gratitude with the universe in hopes that in some way it reaches through the ether and wraps the family in a moment of comfort.

The excitement we felt when we were told there was an offer of a heart was immediately tempered by the realization that a mother and father were somewhere on the other end of this offer suffering such a profound loss it brought us to tears and we felt heartbreak like neither of us have experienced. In a moment when any person would be consumed in grief, this family had the capacity to make a decision to do something to help someone else and save several lives. Nothing can ever take away the pain of this loss, but we hope to help fill that space in their heart with the gratitude of a life saved by a selfless act to donate their baby’s heart. Every year on 11/12 we will celebrate the life of the unknown (for now) donor as a way to honor this gift. We are overwhelmed with gratitude and pain simultaneously and we hope that every day Hope lives is a tribute to their lost loved one. We hope that the donor family can know we acknowledge that the decision they made spared us the same reality they faced and for this we are forever thankful. They gave us Hope, both literally and figuratively; something we hope to share with them one day in person.