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Spring 2017: What to know about contacting your donor family

Making the decision to reach out to you or your child’s donor family is one that’s deeply personal. If you do decide to make contact, Boston Children’s staff will support you, working in conjunction with New England Donor Services (NEDS) to enable this process. All communication is completely anonymous and identities are kept confidential.

Most donor families express appreciation for the letters they receive from recipients and their families. A simple thank you note or card can bring great comfort to a grieving donor family by letting them know their loved one’s gift has made a difference and is appreciated.

Writing to your donor family

If you wish to write to your donor family, please follow these guidelines from NEDS:

  • Please address your letter “Dear Donor Family.”
  • Identify yourself or your child by his or her first name only, or by the organ(s) or tissue(s) received.
  • Sign the letter with first names only. Do not reveal your last name, address, city, phone number, email address or transplant center.
  • Feel free to share information about your family, the condition that led to needing a transplant, and how the transplant has improved or changed your or your child’s life.
  • Place your card or letter in an unsealed envelope.
  • On a separate sheet of paper, please write the transplant recipient’s (your or your child’s) full name, transplant hospital and the date of the transplant. This information will not be forwarded to the donor family. Mail or give both pieces to your transplant social worker.

Your letter will be reviewed by your transplant social worker and forwarded to NEDS. Please note any information that may breach confidentiality may be blackened out. It may take a few weeks for the donor family to receive your letter.

You may or may not hear from the donor family. Their decision whether to write back is also very personal. Depending upon where they are in the grieving process, they may not be ready to reach out. Even if they don’t reach out initially, they may after more time passes.

Bill

Bill Chu received a kidney transplant on March 29, 2017. He recently wrote a letter to his donor family: “When I love and care for my body… my life… I also love and care for your loved one.”

Meeting your donor family

Many families ask about meeting their donor family. The decision to donate is confidential, and NEDS is dedicated to keeping that confidence. If, after making contact with the donor family, you both agree you’d like to meet, NEDS will help facilitate the process.

Before NEDS can help you set up a meeting:

  • You and the donor family must have significant written communication.
  • You need to notify an aftercare coordinator at NEDS that you want to meet the donor family.
  • The donor family needs to be open meeting you.
  • You and your child's donor family must both sign a general release of confidentiality and return it to NEDS.

Nicole and donor mom

One year and four months after receiving the greatest gift of life, Nicole Kouri met with Samantha Cook Browning, Logan's mother. Nicole received Logan's heart and lungs on Dec. 24, 2015 at Boston Children's Hospital. Samantha's words after listening to Nicole's new heart were heartbreaking: “Logan is still alive in Nicole.”

Contact your transplant coordinator or social worker, or reference A Guide to Connecting with Your Donor’s Family, more information.