The Wait & T-Day


We had no idea how long she might be able to hold out and wait for a match to be found. Shortly after being listed, we had a meeting with the Transplant team where they laid out all the possible interventions that could help extend her time. We walked away realizing that the mechanical options available to two-ventricle kids weren’t an option for Hope. She only had one option - intubation to help control how hard her heart has to work and relieve any and all extra work of breathing off her heart. We walked away feeling grateful that at least she wasn’t intubated yet. That gratefulness lasted the length of the walk back to her room where we found the attending gathering the Tweddel & his team at bedside for immediate intubation with ECMO on standby - not a reassuring sign. We knew we were one step closer to losing her. We spent nearly all of the next 3 months with her intubated, and medicated,fighting to stay healthy enough to remain active on the list and be able to receive the gift of life should a matching donor become available. September came and went. October passed.

A few weeks before Thanksgiving we left for Sunday brunch with my husband’s parents, a regular Sunday tradition since she’d been listed. Upon returning to the hospital we learned that a match had been found for little Hope. We have never before been so torn between a mixture of emotions; a wave crashing one after another between excitement, grief, happiness, sorrow, guilt even. We struggled through the next 18 hours as they brought another little one’s heart to Hope where it could bring life once again. Our thoughts were focused on honoring the donor baby and their heroic choice for organ donation. Hope made it through the transplant - all thanks to a yes instead of a no when asked to give the most selfless gift to our family in the midst of their personal tragedy.

We knew what transplant meant and had been mentally wrestling with its reality the entire time we’d waited. We were surrounded by a supportive team in the CICU that counseled us that we aren’t “waiting for someone to die; you are waiting for those special, heroic parents willing to save another child’s life despite their own personal loss - amidst loss, springs life.” We can’t even begin to understand the overwhelming grief donor families feel. Their decision to help other families fighting for life in the midst of their family’s loss must have been extremely painful to make. We thank our donor family every single day for making our daughter’s life possible.


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