Vietnamese couple go all out to save child from rare liver disease

By Phan Duong   February 28, 2024 | 04:00 pm PT
Vu Van Tuan, 48, works in the fields from the crack of dawn every day, even during the recent Lunar New Year holidays.

He often has to juggle farming on more-than-an-acre of field borrowed from relatives and take care of his wife and children. 

His wife Pham Thi Ngu, 45, and daughter Vu Khanh Ngoc, 12, underwent a liver transplant last November. Both were then placed in isolation to prevent post-procedure complications. 

The couple had five children. Three of them developed a rare liver disease at around 5 years old, starting in 2011, with two of them succumbing during treatment. The couple have put everything they have left into saving Ngoc.

"However hectic the situation might be, after more than 10 years, I have gotten used to it. My only wish is for my daughter to get better and my wife to make a speedy recovery," said Tuan from Giang Bien Commune, Vinh Bao District, Hai Phong.

Bé Khánh Ngọc mắc bệnh viêm gan tự miễn, phải đi viện điều trị gần 8 năm nay. Ảnh: Gia đình cung cấp

12-year-old Vu Khanh Ngoc has been receiving treatment for autoimmune hepatitis (AIH) for the last seven years. Photo provided by the family

Tuan's family used to lead a comfortable life. Due to hard work, before 2011 they were able to purchase 700 square meters of land and build a spacious one-story house. Things changed at the end of that year, when his second child, a boy, born in 2001, had jaundice and yellow eyes.

He was hospitalized and diagnosed with autoimmune hepatitis and had developed end-stage cirrhosis. Knowing that it was a genetic disease, he took his eldest daughter born in 1998 and his third child, a girl, born in 2006 to be examined. The third child had the same problem.

AIH is a rare disease, with a prevalence rate of roughly 1.9/100,000 people. It occurs when the body's immune system, which ordinarily attacks viruses and bacteria, instead targets the liver, causing inflammation and liver failure. The cause of the disease is often genetic.

"It was such a shock that every time I think about it, I can't breathe," he said.

In the first days of treatment at the Vietnam National Children's Hospital in Hanoi, Tuan and his wife stayed on the floor with their son's bed on the left and their daughter's on the right.

The family situation caused everyone to feel sorry for them. Tuan said, whenever there was a donation, the hospital would prioritize his family.

Many times, doctors and nurses even spent money out of their own pockets to pay for their family's medicine and hospital bills. They had to spend little on daily meals. On days when there was no charity meal, the hospital canteen spared some portions for them.

The couple devoted all their efforts to taking care of their two children. But after just over three months, the son failed to survive.

"On the 8th day of Tet that year (Jan. 30, 2012), I hugged and kissed my child before going to work and promised to come home early. When I returned at noon, he was already losing consciousness," Tuan said, all choked up.

At the end of that year, Ngu gave birth to her fourth child, Ngoc. As she stayed home with the baby, Tuan took care of their daughter's treatment by himself.

She had motion sickness and struggled with traveling in a bus, so every time she had a treatment schedule, Tuan woke up at 4 a.m., tied her to his back with a scarf and took her more than 100 kilometers to the hospital on his motorbike.

Children with serious illnesses have caused many couples to fall apart. People assumed this family would suffer from the same fate. However, the family have remained tight knit, despite the fact that they were in debt after all the hospital visits.

They always managed to receive support and loans from family and friends, so they have not missed any hospital appointments.

For four years they went from one hospital to another. The girl kept receiving injections and several procedures but to no avail. By that time, a better option for her illness was a liver transplant but the family was strapped for cash, so they tried to maintain treatment with medicine. But they could not do that for long, as the girl got weaker and died.

Just a few months later, Ngoc, then 5, was diagnosed with AIH during a routine check-up. For the past three years, she has spent most of the time in hospital. Ngoc goes to hospital once a month, sometimes staying for a week, half a month, sometimes for an entire month.

When Ngoc was diagnosed in 2020, the family had to sell their house since they were unable to pay the bank debt that was half a year late. Tuan said that the process of listing a house for sale was also difficult because people were afraid that it was cursed with bad luck. A friend felt sorry for his family's situation and bought it. Tuan's family moved back to live with his parents and younger brother.

Tuan used half of the VND900 million (US$36,500) from selling the house to pay their bank debt, and some of the rest to other lenders.

Ngoc was shortlisted for a transplant in early 2023 when her disease entered the final stage. Tests found the liver of the mother, Ngu, matches Ngoc’s. Ngu was thus set on saving her child, even if that meant putting her life on the line.

Tuan was forced to sell his chicken farm prematurely. Together with financial support from charity organizations and the local community, he was able to clock up the VND500 million needed for the liver transplant.

But treatment after surgery has cost a lot more. Ngoc has to take anti-infection medicine costing VND520,000 per pill, and some days she took two to 2.5 pills, not to mention other medications. Her monthly medicine has cost up to VND40 million, of which insurance covered about VND6 million.

The doctor in charge told Tuan that only when his daughter was stable would they cut off expensive medicine. If the medication is interrupted, all efforts will go to waste. 

"The reality was beyond my capacity to cope. Borrowing more money was no longer an option," said the man in his forties.

Tuan kept himself busy to drown out the mental distress. While his wife and daughter were in hospital, he whiled away days and nights at the field, vegetable patch and chicken coop.

At the time of the surgery, the family's youngest son even fell and broke his arm, but Tuan decided to keep it from his wife and daughter.

Chị Ngữ và con gái Khánh Ngọc trong ca phẫu thuật ghép gan, hôm 13/11. Ảnh: Gia đình cung cấp

Ngu and her daughter during their liver transplant surgery in Hanoi, Nov. 13, 2024. Photo provided by the family

Vu Van Cat, a village head in Giang Bien Commune, said for nearly a year while his wife and child were in the hospital waiting for a liver transplant, Tuan was toiling away at work to pay medical fees.

"At the same time that Ngu and Ngoc had a liver transplant, the family's youngest child fell and broke his arm at home, and Tuan did not even tell them. The family had a flock of chickens that had to be sold young to pay for hospital fees, and later Tuan had to clean up the entire farm to ensure a clean environment for his wife and daughter after surgery. Life's really hard for them," Cat said.

He said the whole village feels sorry for the family, but there's only so much they can't do.

With the goal of rekindling faith in pediatric cancer patients, Hope Foundation, in collaboration with Mr. Sun, launched The Sun of Hope program. Another contribution from the community means another ray of light sent to the future generations of the country. 

Click here for further information on the program.

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