Two children in one family successively developed the same rare genetic disorder – progressive familial intrahepatic cholestasis. Facing the challenges of complex pediatric liver transplant surgeries, the medical team at Huashan Hospital’s Liver Transplant Center, with their exceptional skills and close collaboration, successfully performed the operations, giving the children a new lease on life. The Yanhua Public Welfare Foundation once again extended a helping hand, assisting the Huashan Hospital team in completing two liver transplants over five years, bringing a second dawn of rebirth to this family. This is a story of perseverance, guardianship, and love.  

A 1 in 4 Genetic Chance, Both Children Unfortunate

On the afternoon of July 14, in the ward of Huashan Hospital’s Liver Transplant Center, Li Hong (pseudonym) held her five-month-old son, Lele, for nebulized rehabilitation therapy. She could no longer recall how many tears she had shed along the way, but at this moment, she knew that the small, peacefully sleeping body in her arms had finally regained its vitality.  

Five years ago, this family experienced a similar fate – their eldest son, Yangyang (pseudonym), was diagnosed with Type 5 PFIC (progressive familial intrahepatic cholestasis) shortly after birth. This is a rare genetic liver disease caused by gene mutations, and severe cases require a liver transplant. At that time, his mother, Li Hong, donated part of her liver, and Professor Wang Zhengxin’s team performed the transplant. Today, Yangyang lives a healthy, normal life, with no visible signs of having undergone a transplant.  

The family thought the nightmare was over. But a year ago, Li Hong unexpectedly became pregnant with a second child. Holding onto the hope that there was a 75% chance the child would not carry the disease-causing gene, they decided to welcome the new life. However, after the child’s birth, genetic test results showed that Lele was also unfortunate – he was similarly diagnosed with Type 5 PFIC.  

Trust Remains, Guardianship Continues

Li Hong understood clearly that without prompt treatment, Lele could face life-threatening risks. Under the weight of fate, her first thought turned to Huashan Hospital and Associate Professor Shen Conghuan, with whom she had maintained contact. Upon hearing about the family’s plight, Associate Professor Shen Conghuan of Huashan Hospital’s Liver Transplant Center felt deeply sympathetic. After learning of the situation, the medical team at the Liver Transplant Center quickly initiated evaluations and preoperative preparations.  

After multiple rounds of discussions, it was decided that Lele’s father would donate part of his liver to save his son. To minimize the father’s postoperative recovery burden, the team designed a minimally invasive surgical approach for him. At the same time, after completing a series of procedures such as examinations, compatibility testing, and ethical reviews, the Yanhua Public Welfare Foundation stepped in to provide preliminary surgical funding, alleviating the financial pressure on Li Hong’s family.  

Warmth in Medical Care, United on the Transplant Journey 

On the morning of July 7, the surgery officially began at Huashan Hospital. The donor liver surgery was performed by an experienced expert team, using a laparoscopic minimally invasive approach to obtain the left lateral liver lobe, minimizing the physical impact on the father. Subsequently, Professor Wang Zhengxin, Associate Professor Shen Conghuan, and the transplant team performed the liver transplant on Lele.  

At just five months old, Lele’s weight and organ development were still incomplete, placing extremely high demands on the surgeons’ skills. From precise suturing to vascular anastomosis, every step allowed no room for error. As a center with extensive experience in pediatric liver transplant surgeries in China, Huashan Hospital has performed over 300 such surgeries to date, providing solid assurance for this highly complex operation.  

Rebirth with a New Liver, the Child Returns to His Mother’s Embrace 

One week after the surgery, Lele, recovering smoothly, was transferred from the ICU to a general ward. When he returned to his mother’s arms, his sweet smile finally eased the long-held worry in her heart.  

Over five years, from Yangyang to Lele, the fates of the two brothers have been closely intertwined with Huashan Hospital twice. Fortunately, with the ongoing guardianship of Huashan Hospital’s liver transplant team, this family was able to emerge from the depths of fate time and again.  

As a supporting force behind the families of these young patients, the Yanhua Public Welfare Foundation will continue to accompany the children on their postoperative recovery journey, working alongside the hospital to safeguard their future growth. It is believed that these two brothers will eventually embrace a beautiful life of their own.

Translated by Harry chen, a volunteer