Zion’s Transplant and Advocacy: What’s the Power of Two Small Hands?

By Macey L. Henderson and Brianna L. Doby

Zion Harvey, the first pediatric double hand transplant recipient, left the hospital this week after his landmark 11-hour operation in July 2015. With his departure from the hospital, many more patients may take his place; more than 200 inquiries about children with similar extremity problems have been received by the Children’s Hospital of Philadelphia (CHOP). This is not surprising, considering the worldwide media attention to the story of Zion’s new hands. In fact, NBC Nightly News anchorman Lester Holt reported that Zion’s story was one of the network’s most popular and widely shared stories – ever – on social media outlets.

While not all children who could benefit from a vascularized composite allograft (VCA) transplant will be medically eligible, at least one other pediatric bilateral hand transplant candidate has been screened by the CHOP hand transplant program. Zion’s pioneering transplant makes him a powerful new ambassador for the program spearheaded by Dr. Scott Levin, now the world leader in this innovative regenerative transplant surgery.

We know that Zion’s maturity was in part the reason he was selected to be the first pediatric patient to undergo this groundbreaking medical procedure, but it ultimately became his courageous attitude in the face of adversity that captivated the hearts and minds of Americans. To add a layer of importance to Zion’s ambassadorship, we know that the participation of African Americans in clinical trials has been low historically, in part due to high levels of medical mistrust. Zion’s family’s story (as well as his donor family’s story, should they choose to share) shows collaboration and consent with medical professionals for a breakthrough procedure, and how that collaboration and consent created a positive outcome.

As Zion left the hospital on Wednesday, NBC News reported his desire to write a letter to his donor family in gratitude. The donation and transplant community have policies and best practices in place for this type of communication in order to ensure confidentiality. The donor family will be in control of when and how they choose to receive communication from Zion and his family. This protects the donor family’s grief process, and allows them to regulate if and when they are ready to seek connection with recipient(s).

In most, if not all, cases, the 58 federally designated organ procurement organizations in the U.S. require that the transplant recipient’s letter be screened before forwarding it on to the donor family. , In the final step of this process, trained professionals provide education to the recipient, informing them that they may or may not hear back from the family. Again, it’s a matter of choice and consent for the families involved, two important principles that mediate donation and transplantation.

That said, moving forward in the new era of healthcare communications involving social media outlets, will these practices and policies change? Will social media and other forms of digital communication make it harder to protect the confidentiality of donor families? These are worthwhile questions in an era where donation and transplantation can be live-tweeted (see the moving tweets of Stefan Wilson about his brother Justin, and the feat of live-tweeted transplant at Baylor). Providing safe communication between families who “opt-in” to disclosing their identities and experiences could pose new challenges for organ procurement organizations now and in the future. 

Not only does Zion want to write a letter, he also wants to mentor other children who may need a transplant in the future. This is not the first time we have been witness to mature pediatric transplant recipients starting their new lives as advocates for donation and transplantation. In February, to spread awareness about National Donor Day with the #GotHeart Campaign, we were honored to work with a pediatric liver transplant recipient and his mother who are advocates with Indiana Donor Network. Children who experience life-saving and life-changing events via donation and transplantation often provide extraordinarily powerful narratives to our community, and find that they can both inspire and educate the public with their words.

Zion’s smile, sincerity, and courage has moved a nation to click, tweet, and share. Can he inspire Americans to make a life-saving decision, and register as donors as well? Time will tell us more about the power of those special hands.

Published on LinkedIn 28 August 2015