Biliary Atresia: A liver donor, P5 million pesos, in 14 months

Within the next 14 months, KC should undergo a liver transplantation but her parents do not have millions of pesos to pay for the operation.

Kristina Cassandra, or KC, is 10 months old. She could be one of 15,000 children afflicted with this rare, congenital condition called biliary atresia. In the Philippines, according to Lift-B.A.B.I.E.S. Foundation Inc, this ratio translates to around 200 biliary atresia babies being born every year.

Except for the bloated abdomen and yellow color to the skin and to the whites of the eyes, KC is a bubbly baby.

I took the liberty of talking to her parents, Pam and Aljay Reintegrado, the former being a bartender-friend in a bar that soon-to-be-middle-aged people like me go for a night of folk music.

Months ago, he told me about a two-year deadline for a liver transplantation for his first-born. “The difficulty is in finding the liver donor; and then the millions of pesos needed for the surgery,” I remember Aljay telling me amidst a Paul Simon cover being crooned by a local artist.  The operation costs a high of P5 million and a low of P3 million, as quoted by a Chang Gung Memorial Hospital in Taiwan, he told me.

Biliary atresia is a serious disease that affects newborn infants.  It is rare, and is more common in girls than in boys. Its cause is not known. Treatments are partially successful. It is the most common reason for liver transplantation in children, especially in the United States and most of the Western countries.

In between feedings of teaspoonfuls of Vietnamese noodle soup, KC shows off her dimples in a smile for my phone camera. “I let her try whatever I can, especially those that I eat,” says her mother Pam, a high school graduate who has devoted all her time mothering KC. Aljay says her wife has not taken on a job so she can look after KC who was diagnosed with the disease when she was barely three months old.

An attempt to do a Kasai Procedure (hepato-portoenterostomy) on KC turned out just to be an open-close procedure since the doctors found the liver damage to be significant. A liver transplantation is her only hope, and her parents’, too.

In the Kasai procedure, the bile ducts are removed and a loop of intestine is brought up to replace the bile ducts and drain the liver. As a result, bile flows from the small bile ducts straight into the intestine, bypassing the need for the larger bile ducts completely. The Kasai procedure was named after the Japanese surgeon, Professor Morio Kasai who developed this operation in 1959.

“She is irritable and has crying spells,” Pam says of KC who otherwise has a healthy appetite consuming 10 8-oz bottles of milk every day. In between feedings, she has helpings of her favorite Choco Tops and Stick-O. “She likes to eat and would almost take anything I feed her,” her mother quips.

KC’s parents spend about P2,500.00 per month for the baby’s maintenance medicines, until she gets the operation. On top of that, KC gets a transfusion of albumin once every two to three months, costing them about P4,000.00 each time. “We raise money to help fund KC’s requirements,” Aljay says.

Sadly, Aljay is a minimum wage earner, grossing less than P380 a day. Pam does not earn as she attends to KC full time.  They only have enough for the family’s daily sustenance. KC’s monthly needs, apart from the regular albumin transfusion, is a struggle. “Through the help of friends and family, we are able to get by,” Pam says. “We sometimes lose hope, but on the other hand, we can’t. We continue to do what we can for KC.”

A liver donor, P5 million pesos, in 14 months—Pam and Aljay and KC need all the help they can get.

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Deedee writes this to help spread KC’s call for help. Deedee frequents My Bro’s Mustache in Quezon City and met Aljay there about seven years ago. She is now on a personal mission to help the family any way she can.

Help Aljay, Pam and daughter KC—if not as a liver donor or fund the P5 million requirement for liver transplantation—make both ends meet every month by pledging for a future cash gift or depositing directly to KC’s cash card account with Banco de Oro #5267 2700 0616 5498. Thank you.