Tiny heart wanted: one family's experience with infant organ donation

Where does one find such a small heart? After the surgery meant to fix their baby’s heart defect didn’t take, the Ploggers learned the heart finds you.She tried to imagine how the heart would arrive.He’d left her at midnight, her tiny, blue-gray boy. They’d taken him to the operating room to prep. The heart, they told her, should be there by 5am.Throughout the night, she could hear the helicopters taking off and landing from the hospital’s helipad. She could hear ambulance sirens, too, pulling up to the emergency room on the first floor. How would it arrive? Which sound belonged to them?

Stephanie and Austin Plogger found out that their third child was missing the left side of his heart – hypoplastic left heart syndrome (HPLS) – in her 24th week of pregnancy. Roughly 1,000 babies with HPLS are born each year in the US, and it’s only within the last couple of decades that the treatment has shifted from palliative care. It’s so serious, and can be such a wrenching medical experience, that the Plogger’s local cardiologist asked if they wanted to keep or terminate the pregnancy.

Doctors told the Ploggers to expect a two- to four-month wait time. This is where most HPLS patients lose their battles, in the waiting. The “what-ifs” then have to be addressed with these families: what if a heart doesn’t arrive in time? Would the Ploggers be willing to put Wyatt on a life-support machine?

Who then makes the decision on the recipients of those rare, small hearts? A very smart computer system. Once a child is on the transplant list they’re assigned a number by a computerized system maintained by the United Network for Organ Sharing (Unos) so that matches are blind – no amount of money or celebrity status can get you an organ faster than anyone else. The system also factors in the critical need and the patient’s distance from a potential donor.