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Stanley's Story: April 30, 2018

April 30, 2018

In honor of Donate Life month, we highlighted stories about organ donation all month long. Our hope in doing this was to show the many faces of organ donation and raise awareness of the impact and importance. On the final day of the month, we introduce you to Stanley, a liver transplant recipient. Stanley's mother, Amber, is an advocate for organ donation and continues to raise awareness.  Read about Stanley's story as told by Amber Drea. 

 

 

 Stanley was diagnosed with Biliary Atresia (BA) in March 2016 at 10 weeks of age. After undergoing the Kasai procedure (a procedure that potentially delays or eliminates the need for transplant), Stanley had trouble eating and gaining weight and grew increasingly jaundiced. The only way we could feed him was via nasogastric tube and his weakened body became swollen with ascites fluid. In June 2016, the transplant team at Columbia University Medical Center in New York City determined that Stanley needed a liver transplant. Stanley was put on the transplant list with a PELD score of 45.

 

 One of the biggest fears that his father and I had was the unknown of how long it would take to find an organ donor and we were heartsick from the thought of having to watch Stanley suffer for months or even years while waiting for a match.

The doctors informed us that a relative or friend could be a living donor, which meant that if approved, Stanley could get the transplant before the end of the summer and we wouldn't have to watch him suffer as we had feared.  My husband and I decided that I would be evaluated first since I had gone under anesthesia in the past with zero negative effects and I was younger and presumably healthier after spending the better part of the past year pregnant. I began the extensive physical and psychological testing. Three weeks later, on the same day that the doctor gave us the news that I was approved as a living donor to Stanley, we received the call that an organ had become available on the transplant list and was a possible match for Stanley! We chose to accept the cadaverous organ because it allowed me to be fully present for Stanley during his transplant and while he recovered. We also saw benefit in knowing that in the event there was an issue with the transplant, we had mine as a back up.

 

The transplant took place in July 2016 and the procedure went smoothly. Stanley had some post-op complications that kept him in the hospital for seven weeks (six in PICU). However, he’s now one year and nine months post transplant and in exceptional health. We’re so grateful for the family of the 14-year-old child whose organs helped save Stanley’s life, along with several others. Every smile, giggle and joyful squeal, every walk in the park, trip to the library and fun-filled adventure with our sweet boy is because of the donor and his or her family. Even if we never meet them, we hope they know their child lives on in our hearts.

 

You can follow Stanley's journey on by clicking on any of the links below: 

Facebook

Instagram 

Children's Organ Transplant Association 

 

 

 

 

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