David Kenrich Huang’s Struggle for Life Story -- A Biliary Atresia Patient Receives Living Donor Liver Transplantation By Joko Wijaya and Anita

Illness:

David Kenrich Huang, the third son of Joko Wijaya and Anita, was born normal and healthy on November 11, 2014, with a weight of 3 kilograms and height of 45 centimeters.

At the beginning, we thought that David’s skin color was a bit dark. On January 19, 2015, we brought David to a clinic for immunization. Dr. Stefanus noticed that David’s skin color was yellowish so he referred David to Dr. Hannifah, who further performed a blood test, ultrasound and liver biopsy on January 31, 2015, and David was diagnosed with biliary atresia.

We took David to Pantai Hospital Malaysia at the end of March because his skin color had become more yellowish, even under medication. The doctor said that it was too late to treat David there. Biliary atresia had already damaged David’s liver and he would need a liver transplant. We couldn’t believe that this was true so that we took David to Kandang Kerbau Hospital in Singapore and Harapan Kita Hospital in Indonesia for further examinations and David underwent two more liver biopsies in order to make sure there wasn’t a misdiagnosis. The results showed the same diagnosis of biliary atresia, just like his first liver biopsy.

I was shocked when all of the doctors said David needed a liver transplant and the donor’s blood type should be the same as David’s. According to the opinion of the doctors, the success rate from a liver transplant was only about 50% for someone in David’s current medical condition. The doctors also suggested David should drink a special kind of milk, “ALFARE”, even though it might not meet all of David’s nutritional needs.

Due to the high cost of a liver transplant and the special milk formula, we registered for the BPJS health card and chose outpatient treatment. David’s condition continued to deteriorate gradually.

Starting January 22, 2016, David had blood in his vomit because of esophageal varices,

and went to the hospital frequently while we waited for notification from RSCM hospital of a liver transplant. I was also so sad that there was no significant progress even when David used traditional medicines. He looked pale and skinny, had a swollen tummy, and was sometimes delirious. The days dragged on as we waited for a liver transplant, so we got help from a support group for biliary atresia in Indonesia.

Seeking a living donor liver transplantation abroad:

David and his mom, Anita, in Indonesia

At the beginning of March 2016, we learned through her mother’s Facebook that Sherlyn Aurelia, an Indonesia girl, had a successful liver transplant at National Taiwan University Hospital (NTUH) in Taiwan a half year ago. Sherlyn’s mom, Meiceria Poryo, and her family encouraged us to let David follow Sherlyn’s footsteps by having a liver transplant at NTUH.

On March 17, 2016, we made up our mind to seek a liver transplant at NTUH with the support from Sherlyn’s family. We also raised the funds needed for David’s surgery while we waited for David to become stable enough to travel to Taiwan.

Ms. Meiceria Poryo instructed my mother to apply for the required documents for liver transplantation in Taiwan, such as a passport, visa, notarized documents, etc. With every document prepared, we were ready to bring David to Taiwan once his medical condition was suitable for the flight.

In the meantime, David’s attending physician told me to pray and wait patiently because his health was continuing to deteriorate. I was so sad to hear that I had to prepare for the possibility that a worse scenario might happen to David.

I went home with a mind full of chaos, couldn’t sleep well, and had no appetite. The doctor’s words kept ringing in my ears over and over, reminding me that David’s condition might not be able to be controlled anymore. Finally, I wished that I could have one last attempt to save David by taking him to Taiwan for a liver transplant. I hoped it could be David’s destiny to be a fighter fighting biliary atresia in such a difficult way. With the goal of having a liver transplant in Taiwan as David’s final medical treatment, I went to the hospital and asked the doctor to try one more time as a favor to me to improve David’s medical condition so that David could be transferred to NTUH. At first, the doctor

disagreed with my decision and informed me that I would have to take full responsibility for putting David in such a dangerous situation. I firmly told the doctor that I would be willing to take the risk and take David to Taiwan as a last hope. Finally the doctor agreed with my request and contacted Miss Doris, a staff member of NTUH, to arrange for David’s hospitalization at NTUH, and prepared a thorough medical summary. Because of the swelling caused by esophageal varices in his blood vessels, vomiting of blood might be occur anytime on this trip. The doctor strongly recommended that David should be accompanied by a medical team on his journey to Taiwan.

I am grateful to my Lord Almighty God for listening to my prayer. God worked a miracle in David’s life and the doctors. On April 9, 2016, I was informed by the doctor that David’s condition was good enough to leave for Taiwan. I immediately prepared the airline tickets for our families and for the attending physician and medical team that would accompany David to Taiwan.

Liver Transplant at National Taiwan University Hospital (NTUH), Taiwan: Upon arrival in Taiwan on April 11, 2016, we went directly to NTUH’s emergency room for initial treatment, then David was immediately transferred to National Taiwan University Children Hospital (NTUCH).

The Indonesian doctor, Ariani Dewi Widodo, explained all of David’s medical condition and test results to Prof. Yen-Hsuan Ni, and Prof. Ni began David’s medical treatment right away. Two days later, I was admitted to the hospital for a pre-liver transplant evaluation to determine whether I was a compatible donor for David. After a few days of hospitalization in NTUCH, David’s condition improved a lot. David desperately needed a liver transplant to overcome the ravages to his body from massive bloody vomiting. Right after David’s pre-liver transplant examinations were completed, Prof. Ming-Chih Ho, a liver transplant surgeon, consulted with the pediatricians and liver transplant team regarding David’s surgery and scheduled a date for the liver transplant. David was discharged from NTUCH on April 22, 2016 and the operation was arranged for May 11, 2016.

On May 11, 2016, I was moved to the operating room at 8:00 am and David followed a few minutes later. God blessed us. The operation was completed successfully in 8 hours. David and I were transferred to the ICU and general ward separately for post-operative care. I was discharged 7 days after the operation and David was discharged about one month after the operation. Both of us had two regular follow-ups every 2 weeks after being discharged. Luckily David and our family came back Indonesia safely in the middle of August 2016.

Before the operation Day 2 after the operation

Day 6 after the operation Day 8 after the operation

From left to right: Sherlyn’s mom, Sherlyn, Doris, Dr. Jia-Feng Wu, David’s father, Dr. Ming-Chih Ho, David’s grandparents and

David

Outpatient visit 6 weeks after the operation

My Gratitude: We deeply appreciate Dr. Yen-Hsuan Ni, Dr. Jia-Feng Wu, Dr. Ming-Chih Ho and the liver transplant team for the arrangement of David’s hospitalization and the operation at NTUH. All of the medical team members who looked after David during his treatment in Indonesia and Taiwan, and friends from Indonesia, Malaysia and Singapore gave us incredible support and prayed for God’s marvelous miracle for David all the time. Thanks to Ronald McDonald House for offering a house for our stay during David’s medical treatment in Taiwan. David and I will live each day with gratefulness in our hearts forever after.