New lease on life

It was my first time last May to buy fruits from an online fruit store.

I just liked its assortment of fruits. It had blackberries, blueberries, raspberries, fresh peaches, and fresh cherries.

I remember buying a bunch of these fruits last year from a Polish supermarket and brought them with me to Berlin only to accidentally leave them on my seat on the train. I didn’t even get to taste the berries.

After ordering online, the lady seller thanked me profusely, saying my purchase would help a lot for the lifetime medication of her daughter.

I became curious and started searching for the seller on Facebook and found out that her child had surgery due to biliary atresia. But the mother said in her FB post that while the surgery had no complications, the battle is not over since the daughter had to take a lifetime immunosuppressant drug, not to mention constant pediagastro doctor visits and lab tests.

I told a few friends online about my purchase and what the mom said to me which made me tearyeyed. I believe a number of them ordered from her too, just to help her kid and after giving assurance that the fruits were of good quality.

Biliary atresia is a rare congenital condition in infants where the bile ducts outside and inside the liver are scarred and blocked, as a result of which bile cannot flow into the intestine and instead builds up in the liver and damages it, leading to scarring, loss of liver tissue and function, and cirrhosis. There is no cure for biliary atresia except surgery in which the blocked bile ducts outside the liver are replaced with the length of the baby’s own intestine. But once irreversible liver damage has already occurred and the liver fails, a liver transplant is required.

In the case of this particular child, I gather from her mom’s post that she had liver transplant since her mom refers to her child as her liver partner.

I was reminded of this accidental online encounter with a biliary atresia survivor after learning that another child overcame this disease after having a surgery done in India in April of last year.

The parents of Baby Xia, Eric Ngo and Rowena Quipanis, revealed that they discovered that their child had the disease when she was only two months old. Baby Xia just celebrated her fifth birthday last June 24. Rowena said that when they learned that their child had to be undergo temporary surgery, when she was very young but after that and over time, her condition got worse. She even vomited blood. She needed liver transplant.

They had to sell designed t-shirts and asked relatives and friends for help. They also sought help from nongovernment organizations and various support groups. Rowena revealed that they experienced sleeping outside various offices, had to put donation cans everywhere to raise the money needed for the transplant.

Fortunately, the couple attended an event in Taguig City in October 2018 where Sen. Bong Go, who was then still special assistant to President Duterte, was the guest of honor. In their chance meeting, Go heard their situation and said that while he may not be able to give them the remaining P2 million that they needed for the operation, he will do everything to help.

And so with the help of Go, other government agencies, private donors, and the Office of the President, Baby Xia was sent to India in April 2019 and had a successful operation. The child also continued receiving financial help for hospital visits, laboratory expenses, as well as for diapers, milk and groceries. after-care medical assistance was also provided continuously months after the operation. The parents also met the President in Malacanang.

We were told that Sen. Go has assisted other families whose babies are suffering from biliary atresia by facilitating their operation outside the country. Aside from Baby Xia, the Office of the President and Go had also assisted Eren Arabella Crisologo from Butuan City and Dionifer Zephaniah Itao from Cebu.

A liver transplant in the Philippines is said to be at least three times more expensive than if done in India where it would cost only around P1.2 million. Go said this would not be the case if the Philippines had enough equipment, more well-trained specialists and called on the government to further improve the provision of accessible healthcare services and training for health professionals in treating liver diseases, particularly biliary atresia, so that patients will not need to fly to other countries for their operation.

The government is currently enhancing the capability of the National Kidney and Transplant Institute (NKTI) to perform such operations.

Initially, a consortium was formed, which includes the Office of the President, the Department of Health, Philippine Children’s Medical Center and The Medical City, which will have an estimated budget of P3.6 million for each beneficiary. Around P2.9 million will be spent on the operation at TMC while the rest of the budget will be for pre-operation and post-operation care at the PCMC.

For the long-term solution, the government will be developing the facilities of NKTI and will be sending its specialist staff to Kaohsiung Chang-Gung Memorial Hospital in Taiwan for training. The government has budgeted P58.1 million for the equipment NKTI needed and P1.3 million for the batch of 12 specialists to be trained in Taiwan for one to two months.

Go said the objective is for the Philippines to be at par with other countries in providing specialized healthcare services.

For comments, e-mail at mareyes@philstarmedia.com