Kaylee and Lillian: The life-and-death drama of heart transplantation

Two little babies fighting for their lives. Two sets of parents caught between hope and uncertainty. A heart-wrenching story during the US National Donate Life Month.

Last year, I wrote two posts on the ethical and clinical issues surrounding heart donation and transplantation, with one particularly focusing on pediatric heart transplants. The posts were based on articles in the August 2008 issue of the New England Journal of Medicine. The same questions came up this week in the baby transplant drama in Toronto, Canada. Two-year old Kaylee Wallace is suffering from Joubert Syndrome, a fatal malformation of the brain and was on life support system. One-month old Lillian O’Connor has a congenital heart problem and needs a matching heart for transplantation in order to survive.

Kaylee’s parents finally reached the difficult decision of taking her off the life support system and have agreed to donate her organs so that other babies may live. Lillian’s parents were filled with hope when there was a good match between the two babies’ blood types.

Beyond all expectations, Kaylee continued to breathe normally after she was taken off the life support system. In her current condition, it is unethical to take away her organs. Lillian’s transplant has been called off and she has been placed back on the waiting list for organ donors.

The issue sparked a debate on the so-called selective or directed organ donation. The parents got to know each other at the hospital and now the hospital is being accused of not playing by the rules by agreeing to transplant Kaylee’s heart to Lillian. By law, organ donation and transplantation should remain anonymous. Did the fact that the parents knew each other give Lillian an unfair advantage on other children on the list?

According to bioethics expert, an organ should be given to the child with the most urgent medical need.

According to Linda Wright, director of bioethics at the Joint Centre for Bioethics in Toronto: “Organs are one of the most valuable things we have in a society. And so it’s considered the responsible and most ethical way fairest way, is to give it to the person in the greatest medical need. Generally if there are two people in need equally it would be given to the person who waited the longest.”

Directed donation occurs when a donor family identifies a preferred recipient. This is not allowed, at least in Canada “because it could lead to donors deciding that only people of a certain race or status are deserving at a second chance at life.”

This brings to mind the film “Seven Pounds” starring Will Smith. He played a rocket scientist who planned his own suicide, but before killing himself, had chosen seven deserving recipients of his organs, right up to his heart and his eyes. In anticipation of some legal implications of this directed organ donation, he arrange for his best friend, a lawyer, to facilitate the heart transplant to the woman he loves.

However the case of Kaylee and Lillian may turn out, I hope that the story should highlight the importance of organ donation. Check out how you can help during the National Donate Life Month.