Children liver transplantation in Shanghai: the quest for a second chance
By Ouyang Wenqi (欧阳文琪) and Xia Xi (夏希)
Despite her sallow skin and intumescent abdomen, Wang Jinqi, a 6-month-old baby girl, was lying quietly in her mother’s arm, looking just like an ordinary baby.
But one month ago, she was diagnosed with Biliary Atresia (BA). According to her doctor, without liver transplantation, she may not have a chance to celebrate her one-year-old birthday.
According to a survey done by Xia Qiang, director of the liver transplantation center of Shanghai Renji Hospital, one in every 5600 children in China suffers from BA which is the most common indication for liver transplantation in childhood.
Though many hospitals can do liver transplantation nowadays in China, only four of them have mature technologies and skills of operating on children, among which Shanghai Renji Hospital is the best with a total number of 211 pediatric liver transplant surgeries done in 2015, accounting for 95 per cent in Shanghai and 45 per cent nationwide, and survival rate is more than 98 percent. Most babies can survive long after the surgry, according to Geng Wei, doctor of the hospital.
“An increasing number of children have come to our hospital to do liver transplantation over the years,” Geng said. “With our reputation, parents from all over China have brought their children here for surgeries.”
Lu Yimei, Wang’s mother, is one among them. She came all the way from the southwest city Guizhou to Shanghai, trying to find a way to save her daughter’s life.
“This is our last chance,” Lu said, softly fondling her daughter’s hair.
According to Lu, her daughter often had fever after her birth, and icterus just didn’t disappear. She has taken her daughter to several local hospitals, but it had no use at all.
“The local doctors and nurses viewed my daughter as a monster. They sometimes summoned others to my daughter’s ward to watch her abdomen, acting like my daughter was some kind of rare animal in the zoo,” Lu said angrily, holding her daughter tighter. “But despite all the examinations we did there, the doctors didn’t know what’s wrong with her.”
Lu said that it was a tough period of time for her, witnessing her daughter become weaker and weaker every day, but she didn’t dare to cry, as she worried that it would affect her daughter’s emotion.
“Finally I learned online that Shanghai Renji Hospital is famous for children liver transplantation, so I brought my daughter here, trying to get at least a definite diagnosis,” Lu said.
There she found many other babies, looking exactly like her daughter.
“As more children come for surgery, we set up a special area of wards for these ‘golden babies’ this March,” said Qiu Bijun, the doctor in charge of children patients who are waiting for liver transplantation. The patients are nicknamed as “golden babies” by their sallow skin color.
“We did a liver matching for Lu and her daughter immediately after they arrived,” Qiu said. “But sadly, their blood type didn’t match. That means Wang either need to wait for a deceased donor or to receive a part of her father’s liver.”
Lu chose to wait for a deceased donor, as she didn’t want the whole family lying in the hospital.
“We still have a seven-year-old son back home, and I have to breed my daughter occasionally as she hates the taste of deep-hydrolysis milk powder, which will not add burden to her liver,” Lu said.
If Lu’s husband donate part of his liver to his daughter, the whole family will have to stay at the hospital in Shanghai, and Lu worries that no one can take care of her son in that case.
“My daughter is a brave baby; I believe she can wait till we find a donor,” Lu said.
Wang is now in the waiting list in the China Organ Sharing System, which informs doctors all over China once a new donor appears.
Deng Zhiwen, a five-month-old baby boy who shares a ward with Wang, is much luckier. Her mother Tang Yan will donate part of her liver to him. According to Qiu, 80 percent of pediatric liver transplantation were living donor related liver transplantation which means children’s new livers come from their parent’s, and the Deng’s surgery will take place as soon as he finishes all the examinations and proves that he can survive through the surgery.
“Before I came to Shanghai, I had had similar experience with Lu. I was very much depressed by then, crying every day, feeling I was about to go mad,” Tang said, sobbing as she recalled the dark memories. Lu handed her a piece of napkin and comforted her. “Then I found a Wechat group full of parents of BA children, and I realized that I was not fighting alone.”
Tang said that she knew there were two Wechat groups of 500 people and one QQ group of over 1000 people, members of which are all parents in the similar situation with her.
“It’s a good way for us to communicate, exchange information and encourage each other,” Tang said. “Some parents sent the photos of their babies after doing the surgery and recovering very well. These were really reassuring messages.”
“I would say we can provide the best post-surgery caring service in Shanghai. As Shanghai Children’s Medical Center is located right beside our hospital, we often invite the pediatrics experts there to come over and make specific recovery plan for every child in terms of digestion, growth and development, nutrition, and intensive care.” Qiu said. “After 6 hours of liver transplantation surgery, it took a child an average of 2 months to recover.”
“I wish my baby will recover soon after the surgery, so I can take photos of him and share this good news with other group members,” Tang said.
Shanghai Renji Hospital held celebration on Children’s Day every year for these “Xin Gan Bao Bei (new liver baby)”, the homophony of the Chinese for “sweetheart”, not only to celebrate their new life, but also to raise fund for those families who cannot afford the surgery fee.
“Doing liver transplantation is quite expensive, especially for families like us who come from the western part of China, which is poorer comparing to the east. We have already spent 100 thousand yuan [more than US$15,300] on medication since we came to the hospital, and we are thinking of applying for financial aid,” Lu said.
Qiu said that though the hospital itself don’t offer financial aid to the children and their families. The hospital is cooperating with 19 organizations and companies, including the China Soong Ching Ling Foundation, to raise money for those who need help.
“We have worked with the China Soong Ching Ling Foundation for several years. It is a foundation with good reputation, so many corporations are willing to donate money to the foundation, then the foundation providing financial aid for our patients,” Qiu said.
He added that as a mature organization, the foundation has a thorough scheme of audit and supervision, which can make sure that the money goes to the one who really needs. Once a financial aid is provided, it will cover all the fee that the family cannot afford.
“We don’t know whether we will receive any financial aid if we apply for one. But no matter how much we spent, we will never give up our daughter. She is my most valuable treasure,” Lu said. “As long as she lives, she will bring us hope.”
