Testimonials

Elliot was born with biliary atresia, a rare disease that was identified when he was only 4 weeks old. His slightly yellow skin alerted a vigilant doctor. Unfortunately, the Kasai operation performed two weeks later did not produce the expected effects, thus opening the discussion around the need for a transplant for our little boy. The months that followed were filled with emotions, uncertainties, and steps to get Elliot on the organ waiting list.
During this period, our son was admitted to the Geneva University Hospital (HUG), far from our home, which made things even more complicated with our two other children.

We were fortunate that Elliot was able to benefit from an organ donation at the age of 8 months. This transplant literally gave our son a second life. Barely 15 days after this major operation, he was able to leave the hospital and began to eat and drink normally. Our family life gradually resumed its normal routine. Elliot started daycare 6 months after the transplant, which allowed me to return to work.

Our gratitude to the donor's family is infinite. Their act is constantly in our thoughts, especially during significant moments like Christmas and the anniversary of the transplant. Our thanks also extend to the wonderful pediatric team at the Geneva University Hospital (HUG) who accompanied us throughout this ordeal. Thanks to their dedication, we always felt heard, informed, and supported.

Today, Elliot is a tall, bright, and lively 14-year-old teenager. His school days go smoothly, and he is full of joy. Although his daily life requires regular medication and quarterly medical check-ups, he is living proof of the miracle of transplantation. Thank you from the bottom of our hearts to everyone who made this possible.

Elliot's Mom

* pseudonym

A journey of hope and resilience with Marcus*

On August 12, 2017, our beloved son Marcus lit up our lives with his arrival into the world. That day, our happiness seemed endless until we were confronted with the unknown just a few days later. While Marcus was hospitalized for neonatal jaundice, we discovered the term "bilirubin" and plunged into the world of cholestasis, with no clear diagnosis in sight. Our journey led us to the University Hospital of Geneva (HUG), where an exceptional team at the Swiss Pediatric Liver Center, became our pillar of strength and hope.

After months of uncertainty and anxiety, Marcus was finally placed on the national liver transplant list. September 27, 2018, the day his fate changed, will forever be etched in our memories. The anxious wait was punctuated by three calls from the operating room, keeping us on edge until the much-hoped-for good news came: the transplant was a success.

The days that followed were filled with mixed emotions as we navigated between hope and fear. But at every step, the Geneva University Hospital (HUG) medical team was there, guiding us with compassion and expertise. There were many highs and lows, but we always found the strength to continue, driven by unconditional love for our son and the determination to see him heal.

Today, as we look back on this journey, we are filled with deep gratitude to those who crossed our path and supported us. The Geneva University Hospital (HUG) was more than just a hospital for us; it was our refuge in the storm, our beacon in the dark. And Marcus, with his strength and resilience, continues to inspire us every day, reminding us of the precious value of every moment spent together.

*Pseudonym
 

A few months after I was born, my mom noticed that I had a yellow skin. She told my doctor about it and, after various tests, they noticed that my liver was suffering, that there was a problem. 

The problem was called biliary atresia. A term that meant absolutely nothing to my parents. The doctors explained to them what it meant and what consequences it entailed. Although my parents were devastated by this news, they remained strong for me and passed on their courage. This helped me to fight with all my might, even though I was only a year and a half old when I received the transplant.  

The post-transplant period was very hard for my parents, as they had to juggle between check-ups at the Geneva University Hospital (HUG), those at the family doctor's, medication and so on. And for all this, I thank them from the bottom of my heart, because the importance of the parents in the follow-up to the transplant is just as important as that carried out by the medical team, one cannot go without the other, it's a magnificent team effort. 

Now I'm 28, my life is going remarkably well, I've successfully completed my studies and I'm now working in the world of early childhood. In life I have many creative hobbies and I love to laugh and make people around me laugh.

I would like to thank the entire medical team for the care they have given me over the years and continue to give me today. They taught me what it means to "take care of others" and why we do these social professions. 
I would also like to thank the donor's family, whose act of kindness saved me and others. It's a priceless act. 

Thank you for reading, 

V.

On May 13, 2019 at 4:23 pm, our little boy Elias was born, our first child so long awaited by us and our loved ones. He's a beautiful baby with a slightly yellow complexion, which is common at birth, so no one is worried.

A few months before he was 2 months old, Elias turned very yellow again, including his eyes. My husband gets worried and decides to take him to the hospital for a blood test. I think he's too alarmed, attributing the jaundice to Gilbert's syndrome, which runs in his family.

Elias has his first blood test, the first of many. The doctor informs us that he has cholestasis and that his liver results are very poor. I collapse. I'd missed everything. After numerous tests, including a cholangiogram to rule out biliary atresia, we learn that Elias has a genetic disease: alpha-1 antitrypsin deficiency. My husband and I are both healthy carriers, but we didn't know it.

For everyone, it's good news: the liver will recover on its own, he just had a bad start and he certainly won't need a transplant... But Elias doesn't do anything like the others, and his disease is progressing very fast... too fast. His liver is cirrhosing and his belly is getting fatter and fatter from ascites. In the end, we took the necessary tests to put him on the waiting list for a transplant. He'll only be there for a few days and will be put on the super urgent list.

On September 24, 2019, at 4 months and 11 days old, Elias was reborn thanks to the transplant. The very next day, his complexion turns rosy and the whites of his eyes become white again, it's incredible. Thirteen days later, we return home. Elias has a lot of medication to take, but he's doing well. We have regular check-ups, then less and less frequent. Today, Elias is a little boy who goes to school, plays basketball, swims, rides his bike and scooter. He's doing well and doing everything a 5-year-old boy can do.

We are eternally grateful to the entire team at the Swiss Pediatric Liver Center (HUG). Above all, we think of the donor who saved our baby's life and enabled us to live an ordinary family life despite his extraordinary journey.

Elias' parents
 

Our daughter Léonie was born with biliary atresia, a rare liver disease that was diagnosed when she was 3 months old.

At that point, she was taken into the care of the Swiss Pediatric Liver Center (HUG) and received a successful Kasai operation. Unfortunately, her small liver was already badly damaged and the only chance of keeping her alive was a transplant.

Her first months of life were eventful, with visits to the hospital every two weeks to monitor her health. Each time, blood tests, examinations and hospital stays were necessary.

We were accompanied by a fantastic team, the nurses on the front line, to help and support us at every pre-transplant follow-up visit.

She was put on the waiting list at 6 months, after a week's pre-transplant check-up. We then waited 2 months and 4 days. Although this was a short time, it seemed extremely long.

The call just before Christmas, announcing that a liver had been found for Léonie, was a unique moment. The doctors' words are engraved in my mind forever.

We had total confidence in the team and, after 7 hours of surgery, we had our 8-month-old baby back. She now had a chance to grow up.

Léonie spent 3 weeks in hospital, then 6 months at home to protect her. She started nursery school at around 2 years of age and school at 4 and a half.

Today, she's almost 13. She's doing well, living like any other teenager with her friends. She bikes, skis, plays, does gymnastics and goes to ski camp with the school!

Every year, we celebrate her birthday and the anniversary of her transplant with great emotion.

We are infinitely grateful to the family who accepted his organ donation at a time of great sorrow. We live to honor the loved one they lost. THANK YOU.

Léonie's mother and all her family.