Putting a Face on Organ Donation

Our appeal to find live liver donors for both twins traveled around the world almost at the speed of light.  Messages landing by the hundreds in my Facebook account set up for the twins (https://www.facebook.com/Liver-Transplants-for-our-Vietnamese-Twin-Girls-1401239010168456/) came from people from all kinds of different ethnic backgrounds.  People of all races, of all ages, both men and women, speaking all kinds of different languages: all united by the same desire to make a good deed.

When Binh went in to receive her gift of life in the form of a liver coming from a live anonymous individual, I started to fantasize about who that person might be.  Was this person a mother herself, pushed by compassion, solidarity, and the realization that this could very well happen to her own children?  Or was this person a father like my husband, inspired by what Michael did and wanting to help us out?  Could this person be a young man with a bright future ahead of him and a strong desire to make the world around him a better place?  Or was this person a young woman who had been personally affected by someone in need of an organ donation?

Whoever that person might be, I had come to accept that they might or might not reach out to us.  I suspected they would probably follow the Facebook page (https://www.facebook.com/Liver-Transplants-for-our-Vietnamese-Twin-Girls-1401239010168456/) if they wanted to follow Binh’s progress.

The mystery did not last for very long.  A few weeks after Binh’s liver transplant, an anonymous person, hidden behind a false identity, revealed to me the identity of the donor, in a private message.  I remember feeling enraged for having the donor’s identity thrown at me.  The name and face of that special person was to be forever engraved in my memory.  I remember feeling concerned for the donor who wanted to remain anonymous.  I also remember feeling like I was betraying the donor: I knew who they were, but could not say anything.

I tried carrying on for months with this secret in my heart, unsuccessfully.  I became consumed with the idea of this missing family member, especially around bigger family events.  The weight of the anonymity became unbearable.  However, with deep respect, I made a plea to myself to wait the person out.  I worked on trying to accept that they might never reach out.  

I went through months of sadness and emotional pain.  All I wished was to be able to say thank you in person to that special person for saving my daughter’s life.  Was that person feeling the same distress for not being able to witness her progress in real life?

Fortunately, the curse of knowing who this person was, slowly became a blessing as we started to exchange in private written conversations, discovering our common views on Life.  It became a well-coordinated dance with words, like a tango, always mindful of the other while sharing deeper thoughts, always in respect.  But never mentioning the organ donation.

 I reached out to the Living Donor Transplant Program at the hospital in hopes that a meeting could be facilitated, or at the very least, that the donor could be notified that we were willing to meet.  Little did I know then that our donor had expressed the same wish to the Program.  Both our requests were denied.  The integrity of the Program would be protected, to the detriment of the emotional well being of both the donor and the recipient’s family.   The principle of anonymity would not be compromised.  It would prevail.

I believe that from that moment on, we both decided we had to eventually break the silence. Thanks to social media, thanks to the anonymous person who revealed to me in the first place who the donor was, we were able to reach that turning point.  Binh’s donor and our family were able to meet.  Our meeting has turned better than expected.  Our family has gotten bigger with this new member joining in.  The mystery person was demystified, in simplicity and naturally.  We are grateful for what Life has given us.  Binh will be able to grow up with this person as part of her life, and this person will have the joy to see the product of the hardship they went through to save her life.

What is to be said of those donors and recipients who have never made the headlines and who might suffer in silence from not being able to bring closure?  How are they supposed to find each other on their own, without any support? While we understand the position of the Program on the respect of the anonymity status, we also believe each case has to be treated individually, in order to ensure the well-being of all parties involved. We understand that not all stories will end like ours. Let’s face it: we were particularly lucky to be such an excellent match of characters on top of being a perfect organ match. However, we each have lived through the imposed silence and believe it is the responsibility of live organ donation programs in the various institutions operating such programs to ensure both recipients and donors are well taken care of.