Biliary Atresia: Stories of Filipino Families Racing Against Time

Biliary Atresia: Stories of Filipino Families Racing Against Time

Remember the happiness you felt when you saw the two pink lines on the pregnancy test? You can’t wait for your husband to get home to spill the good news. And then you carried your baby in your womb for nine months. Your days were filled with love and excitement. You were probably making plans already for his 1st birthday and somehow wonder if your bundle of joy will be an engineer, a doctor or an artist. It was pure bliss when you heard him cry at the delivery room. Finally, you are a family. Tears of joy.

What can possibly go wrong?

Your baby is yellowish. The elders say it’s normal. All you have to do is let him catch the morning sun. He just need a dose of vitamin D. But your instinct tells otherwise. And so you scheduled an appointment with the pediatrician.

Biliary Atresia is a rare disease of the liver and bile ducts that occurs in infants.

Biliary atresia is a rare disease of the liver and bile ducts that occurs in infants. Symptoms of the disease appear or develop about two to eight weeks after birth. The bile ducts are either narrow, blocked or missing. About one in every 20,000 is born with biliary atresia. In east Asia, an alarming one in every 5000 babies has been diagnosed with this disease. (http://www.cincinnatichildrens.org/)

Biliary atresia cannot be cured by medicine.

A temporary solution to biliary atresia is a kasai procedure. The operation can help in normalizing the function of the bile ducts for months and in some cases for years. For those babies who are not qualified to undergo kasai, the only option is liver transplant. Liver transplant costs around P4,000,000. While most parents go to Chang Gung Memorial Hospital in Taiwan, they can also have the procedure done in the Philippines at The Medical City.

Pre-transplant Babies

Biliary Atresia: Stories of Filipino Families Racing Against Time

Sybyl Shynn was four months old when Lav Sansolis Mabulay (mother) noticed that the baby’s stool was chalky white. They rushed her to a private clinic but was advised to bring Sybyl to the hospital for a liver biopsy.

“Me and my husband were both speechless. As a mother, I got too emotional and became depressed. I treated Sybyl as a normal baby back then, and it was difficult for me to accept the truth about biliary atresia – that my baby can, most probably, live up to 2 years old only if she will not undergo liver transplant which costs about 4-4.5 Million PhP, and insomnia was eating me back then thinking how we will be able to raise millions of Pesos in a year so Sybyl can undergo liver transplant on or before her 2nd birthday. It’s like there’s a bomb ticking inside my head.”, said Lav.

Baby Monay, as she is fondly called because of her chubby cheeks is turning 2 this May. She only weighs 7.5 kilograms. She looks normal but she’s underweight and too small for her age. She also currently has pneumonia.  Lav is raising funds by selling t-shirts and baked goodies in bazaars. They have raised P30,000 so far.  Lav created a facebook page for Sybyl  for her fundraising. Visit her page at https://www.facebook.com/SaveBabyMonay/

 Biliary Atresia: Stories of Filipino Families Racing Against Time

“When Ella was 2 months old, her skin turned yellowish. Her general pedia referred us to gastro pedia to know the reason why. The gastro pedia requested her to have liver biopsy, abdominal ultrasound and do some laboratories. We showed all the results to her gastro pedia and she was diagnosed with biliary atresia. At 3 months old, she underwent kasai procedure. We thought she will be fine until her doctor said she still needs liver transplant because her liver is on end stage of liver cirrhosis.”, said  Ella’s mom Zhallie.

Zhallie is a single mother. Baby Ella is now 9 months old. As of February, she has raised P50,000. One of the challenges she faces in raising funds is that people think she is only making up stories to collect money.  Ella’s facebook page is https://www.facebook.com/ellaneedshelp/

 Biliary Atresia: Stories of Filipino Families Racing Against Time

Shaila was 8 days old when the doctors in Makati Medical Center suspected that she has biliary atresia. It was only confirmed during her kasai operation at PGH when she was already 11 weeks old.

“We were devastated finding out the possibiity that our 1st born will have to undergo surgery at a very young age. But we realized that we have to accept the possibility and do something about it soon.”, said Shaila’s mom Sherry Lyn. “We sell shirts, donated pre-loved clothes and movie block screening.  We  signed up in a crowdfunding website (www.gogetfunding.com/savebabyshaila) and continuous efforts to share Shaila’s story on social media.  I am also planning to do text blast and email blast  to drive donations and boost sales and awareness.”, Sherry Lyn added. Shaila’s facebook page is https://www.facebook.com/savebabyshaila

Our main struggle is to find foundations/institutions that can provide financial assistance for us to meet the needed funds on time.

Biliary Atresia: Stories of Filipino Families Racing Against Time

10-month old Stevie Arghie is from Pampanga. His diagnosis is biliary atresia with chronic liver cirrhosis. Like Sybyl, Ella and Shaila, he also needs to undergo liver transplant. Living in the province is a challenge for Stevie. Traveling to Manila to have Stevie’s regular check ups means additional expenses. Stevie’s dad Arghie raises funds by selling cookies and asking establishments to allow him put coin cans for donation. Stevie’s facebook page is  https://www.facebook.com/Please-pray-help-and-save-baby-Stevie-Arghie-M-Garcia-1043513699002170/

We are afraid that we might not raise enough funds in time and we pray that we are qualified to be a liver donor.

Biliary Atresia: Stories of Filipino Families Racing Against Time
Pre-transplant baby Qwynn and Post-transplant baby Kal-el

Jenny Mohamad, mother of post-transplant baby Kal-el recalls her fear before her son’s liver transplant. “We thought na di namin kakayanin mag raise ng  4 million pesos pero nabuhayan kami ng loob nang malaman namin na pwede pa lang mag fundraising. So hindi na kami nag-aksaya ng panahon to look for people na gagawing instrumento for Kal-el’s liver transplant. Sa awa ng Diyos, exactly 1 yr old sya nang naoperahan sya. it has been ten months since his operation.”

Mommy Jenny bumped into Mommy Junelyn during one of Kal-el’s check up. Baby Qwynn was diagnosed with biliary atresia when she was 6 weeks old. She underwent kasai procedure in the hope that Qwynn’s health will improve. The procedure has caused the depletion of the family’s funds. Sadly, baby Qwynn’s response to the procedure was unfavorable and they were advised that a liver transplant is needed. Baby Qwynn’s facebook page is https://www.facebook.com/Qwynns-battle-against-Biliary-Atresia-878923442198756/

Biliary Atresia: Stories of Filipino Families Racing Against Time
Post Liver Transplant Baby Kal-el

According to Jenny, post transplant patients are required to have a weekly check up during the first few months. Once the baby’s condition stabilizes, the baby still needs a monthly checkup. They are spending around P25,000 a month for the laboratory tests and maintenance medicines.

LITRO “LIver TRansplant Operation” Babies Phils. is a group of parents united for babies with chronic liver disease who need liver transplant.

Biliary atresia is not as popular as other illnesses. It is considered a rare disease but you’d be surprised by the number of Filipino babies afflicted with it.  These parents with biliary atresia babies are burdened with raising at least P4,000,000 at the soonest time possible. There may be health complications for every month of delay that will put the baby’s life at risk and will lessen the chance of a successful liver transplantation.

Biliary Atresia: Stories of Filipino Families Racing Against Time

Aside from monetary help, sharing their stories through social media increases awareness about biliary atresia. These families are able to raise funds through the facebook pages they created. If you have a baby or know someone whose baby is suffering from biliary atresia, don’t lose hope. There are people who are willing to help. Be inspired by these parents who are not giving up.

If you wish to extend help to these babies, visit https://www.facebook.com/LITRObabiesphils/

Roselle Cee Tee

A coca-cola dependent life-form who is torn between eating and getting fit. I used to play tennis and dance zumba but is now curious if I can run farther than 500 meters. I need wi-fi like PopEye needs spinach. Bucketlist: learn how to swim and ride a bike.