Madeline’s Story

by Shani Sam.

A chance meeting with Debbie Bielech, founder of the Children’s Organ Transplant Society of B.C., helped us survive the difficult transplant journey with our daughter.

We met Debbie after a stressful weekend in and out of BC Children’s Hospital. Our daughter Madeline was born with what is thought to be a variant of biliary atresia. She was not diagnosed with liver disease until she was 10 weeks old. Her disease progressed quickly and by the time Debbie spotted us in between appointments; it was more than obvious to her that our baby was very ill.

Debbie quickly introduced herself and spoke of her own story of donating a portion of her liver to her son Matty. She was warm and friendly and understood immediately how we were feeling. Debbie told us that she had founded the Children’s Organ Transplant Society of BC after recognizing there was a lack of support for parents and children who are waiting or recovering from organ transplants. We exchanged phone numbers and felt more positive going to our appointment to see the transplant nurse at BC Children’s Hospital.

Soon after we met, Debbie phoned and invited us to her Society’s annual summer picnic. Apprehensively, we agreed to attend. We were nervous about our daughter’s pending liver transplant assessment in Edmonton, but we knew that it would be a privilege to speak to parents who have traveled the same road. Going to that picnic was the best thing we did to prepare ourselves for the long journey ahead.

Everybody involved with the Children’s Organ Transplant Society picnic had a story that was unique, beautiful, and miraculous. It was so helpful to see with our own eyes the amazing children that have survived and thrived after receiving an organ transplant. Most importantly, we could see that these wonderful families had a sense of normalcy in their lives and that gave us hope for the future. We often thought of the children and the families at this picnic during the darkest days of our daughter’s illness.

Madeline was fortunate to receive a new liver last November, and has had a relatively uncomplicated recovery. We were able to attend the Children’s Organ Transplant Society Picnic again this summer and it was wonderful to reconnect with some familiar faces as well as meet new friends. It is an honour to be a part of this caring group of strong, courageous and giving parents and children.

We hope that the Children’s Organ Transplant Society continues to grow and reach out to families across BC. We encourage families who are going through or have survived the organ transplant journey with their child to become involved with the Society. We also hope to be able to give back and help families the way the Children’s Organ Transplant Society has helped us survive our roller coast ride of a journey.