Supersprookje – A tale for families facing transplants
Esther Scheide received a new liver almost six years ago. Before that, she was on the waiting list for 13 months while her health continued to deteriorate. She had polycystic liver disease. “With this condition, your liver values remain good, which means you only move up the waiting list “by time”,” Esther explains. “My children were 2 and 4 at the time, and I was getting worse and worse. We felt a strong need to discuss the situation with them. The eldest especially needed reassurance from mummy. But how do you explain something like that? We looked for a book but couldn’t find one suitable for that age group. That’s how I came up with the idea of making a book for my own children. Because my condition was getting worse, I had to pause creating it. After the transplant, we wanted to finish it anyway, it was also as a way for us all to process what had happened. I finally finished the booklet on my liver birthday, the first birthday of my new liver.
My children, Bo and Tom, loved it. They took it everywhere and have since used it for presentations in class. Of course, it’s about SuperBo and SuperTom, and that’s them! They literally thought, “This is our story”. It gave us the idea of ordering extra books and see if other families in this situation needed them too. This wasn’t the plan initially, but the responses were very positive and that’s how the ball started rolling. Erasmus MC was the first to buy booklets to hand out. That’s how it became increasingly well known. It also gave me a good feeling to give something back after receiving such a wonderful gift. I received many responses from grateful parents. The booklet provided new opportunities and tools to talk about transplants with children. At one point, someone asked if I had a booklet about kidney, heart and lung transplants. A great idea and I do indeed want to make those other booklets. The story can then be adapted slightly, and there is the option to write and draw your own tale at the end of the book. I wrote and illustrated the kidney story and had it proofread by transplant recipients and medical specialists. So, my second booklet was also well received. I even had the request to translate it into English, German, French and Mandarin!”
The lost strength
The books focus on the aspect of the parent’s loss of strength. Children understand this well, just as they understand that a lost cuddly toy cannot simply be found again. “A transplant has a huge impact on a family. I couldn’t be the mother I was and wanted to be. Despite all the help from friends and family, the uncertainty was overwhelming.”
“With this booklet, I hope to provide parents and children with support during this challenging and uncertain time. I hope their fairy tale ends just as beautifully as ours.” Esther Scheide
“The transplant had a huge mental impact that I am still processing. I thought that six years later, this would be less of an issue. Mental support for patients and their families is therefore necessary in the long term. Being able to help your children in this process brings peace of mind. Hospitals are paying more attention to this. It is vitally important that you and your family are “seen”, both during the waiting list period and afterwards during recovery. My physical recovery was very quick, I was very well looked after medically and during my rehabilitation. That gave me a feeling of security, and I was therefore never afraid of the transplant. That confidence made me strong.”
Liver birthday!
“I celebrate the birthday of my new liver every year. It’s important to celebrate life and enjoy it, especially the little things matter. Every year, I reflect on this big moment and thank my donor. I wrote a letter to the donor’s next of kin. That’s quite a process, because what do you put in it? Receiving such a huge gift has two sides to it: indescribable joy and happiness with new opportunities in life for us, but sadness and farewell on the other side. On my liver anniversary, I feel extra grateful. Last year, after five years, we even had a big party.”
Person and patient
“What gives me a lot of support are the patient associations, Facebook groups and my membership of Transplantoux. Last year, our family took part in the Transplant Games in Belgium. It was a wonderful event to experience together. My children were almost ‘celebrities’ there because they were recognised as SuperBo and SuperTom. I speak at various (medical) conferences, such as the Dutch TransplantERENdag. On this day, transplant recipients and their relatives come together, stories are shared, and these moments do me good. When I had just had my transplant, I didn’t feel the need for any of that, but that’s not how it works.”
Memory game
“I still wish to make booklets for all the organs. In the meantime, I have designed a memory game that includes all the organs. It is also international. You can play it from an early age and even simplify it. I made it together with my daughter, and my son helped me decide which cards would be useful. For example, having blood taken isn’t scary, but helps you to find out what’s wrong. You can play your way through the world of transplantation. I took it with me to ESOT in London for the first time. It’s already all over the world! Everyone can get to know it at ETAM 2025. I’m happy to help raise awareness. Ideally, I would like to focus solely on Supersprookje and be a regular speaker at conferences, but I have my family and my other work. I also need to maintain a good balance.”
“The reactions from parents and grandparents are very positive. The book opens doors to discussing transplantation and works well as an icebreaker.”
Meet and greet at the ETAM 2025
Esther Scheide will be our special guest at the Eurotransplant Annual Meeting to present her books there. Want to know more or contact Esther? Take a look here: Supersprookje- The picture book for talking to children about organ transplantation in adults.