Research Shows Families Want Option to Donate Post-mortem Tissue

Families who lose a child to brain cancer, want doctors to give them the option to donate their child’s tissue.
Donating tissue not only contributes to research for a cure, but donating helps families grieve and see something good come from their tragic loss.

These conclusions come after surveying more than 100 families whose children died of brain cancer as detailed in an American Society of Clinical Oncology Journal of Clinical Oncology article. Gift from a Child founders Al and Patti Gustafson co-authored the article, along with clinicians and researchers from seven other institutions.

The article states that parents deserve to be asked about tissue donation and have very strong reasons for ultimately deciding to donate. By not asking, doctors make the decision for families. They will not be donating.

According to the authors, choosing donation can be a first step in the grieving process. As one mother said, “Being able to donate something that may prevent another child from suffering how our daughter did was crucial to our closure. It was beneficial to our family to know she was contributing even after death: to know there was one last thing she could do after she’d taken her last breath.”

In fact, one parent who was not asked to donate tissue lamented, “I really wish I could have given my son this option. The opportunity was never presented … I envy the parents that were able to donate.”

Doctors often don’t want to ask families about this sensitive issue, and also don’t have the time or the staff to coordinate tissue donations. Gift from a Child can help with both of these issues.

Gift from a Child is part of a postmortem CNS tumor collection program that includes six Centers of Excellence for coordination, processing, and storage of donated tissue. These doctors and researchers work collaboratively across institutions sharing data, research, and ideas. Gift from a Child is a program of the Swifty Foundation.

A Tissue Navigator from Children’s Hospital of Philadelphia and a clinician from the Ann & Robert H. Lurie Children’s Hospital were co-authors of the Journal of Clinical Oncology article.

Gift from a Child is a national initiative supported by families who have lost children to brain cancer with the mission of increasing post-mortem pediatric brain tissue donations through advocacy and education. We believe in giving families the power to make a choice that can save lives in the future.

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