Debbie Bielech is a living donor, who donated a portion of her liver to save the life of her son, Matt Van Eeuwen. Debbie now empowers and supports other families in BC going through similar experiences through the Children's Organ Transplant Society (COTS)
Debbie, can you tell us about what led to Matt needing a transplant?
Matt was born 10 weeks pre-mature and had necrotizing enterocolitis (NEC), which meant whenever he was fed his bowel blew out. He had many bowel surgeries in the NICU, where we stayed for about eight months. During this time he also developed cirrhosis of the liver, and it became clear he would need a liver transplant.
It was obviously very difficult, because physically he became so yellow, he cried green tears, and started bleeding out from liver failure.
While we were waiting in Vancouver he sadly started to get really sick, to the point where waiting was no longer an option. Before he was listed, I had checked to see if I could be a donor, because I knew we were the same blood type. It turned out that I was a perfect match, and on November 12th, I donated part of my liver to Matt when he was just 8 ½ months old.
What were some of the things that went through your mind thinking about the procedure?
I believe that I was among the first 10 in Canada to donate part of a liver to a child, and there were definitely questions about organ rejection, Matt's quality of life after transplant, and what sort of complications I would have after transplant. Ultimately, it didn't really matter— Matt was my second child, I was 40 years old, and if I didn't make it and he did, I would be really happy with my decision because we would do anything for our kids
What did you learn through this process?
One of the things that I learned in the process is how important it is for there to be another adult capable of staying with the child post-transplant. We were out of town and pediatric liver transplants for patients from BC are still done in Edmonton, so there needs to be someone else with you who can check on how the child is doing. Another learning is how important it is to communicate with the hospital and health care providers about connecting with social workers for housing arrangements or any other requirements that you might have when you're in a different province.
Matt, what has your life been like since receiving a transplant at such a young age?
My quality of life has been good. I'm just living every day to the fullest and I don't take any day for granted. I'm happy with where I'm at with my health today; it's the best it's ever been! I used to be really active in sports but I'm also cautious about my lifestyle given my medical history and transplant. I still keep fit by running and playing baseball, though I've had to give up competing at a provincial level in track because of my gut complication. I've got a strong will to do the best I can, in whatever I can do.
Transitioning from pediatric to adult health care has been smooth and I'm very happy with how things are turning out. I look forward to sharing my story now, to help people in any way I can, whether that's using my example to help parents considering the decision of donating to their kids or to any other avenue where my story can be used to educate people about living donation.
What motivated you to start Children's Organ Transplant Society (COTS)?
When Matt was about a year old, I started to ask questions to the transplant nurses around resources, and community and social programs for transplant families. I decided that I was going to raise money and organize a family picnic for families just like ours. That was the beginning of COTS, and it has grown substantially since then. We provide education and financial support to families of children that are in hospital for conditions that require transplant, and work closely with BC Children's Hospital and the social workers there to ensure availability of resources.
What is your perspective on the 50 Years of Transplant in BC?
It is wonderful to be a part of the transplant community in BC. Looking towards the future, I feel hopeful given how far our medical system has come. Collaboration is key, and I think all the knowledge we have gained in this province and information from around the world that has been integrated into practices are only going to improve the scope of transplant in BC.