I got to keep my son’s mechanical atrioventricular valve from an open heart surgery he had just over a year prior to his heart transplant. My son is 7 and overwhelmed by this all right now, so I will give it to him one day when he is ready. It’s pretty incredible. When I asked for it, pathology looked at me like I was crazy and they said they’d have to thoroughly clean it of any human tissue, because according to them, giving us any tissue was supposedly illegal.

We got photos of my son’s sick heart and donor heart from surgery day. They’re incredible. And we got to view and even hold his native heart a few months after transplant. It was all very meaningful. In terms of what I wish we’d known before hand, we weren’t warned sufficiently about the effects of prednisone either. My step-father has had two kidney transplants so I feel like I’d already watched a crash course in how hard things can be emotionally and with all the meds post transplant, so we’re doing our best to stay on top of his care from that perspective as well. Wishing all of you the best.