“I was in complete, utter shock. I’d never heard of biliary atresia before and now there was talk of a liver transplant! My sweet daughter Rand was hardly 3 months old and perfectly fine when she had woken up that morning — how did this happen?
When I looked at my husband Cole, I saw tears running down his face. Later,he told me that he immediately knew how severe liver failure can be when he heard the news and couldn’t bear the thought of seeing our little girl battle it.
After four blissful years of marriage, Cole and I were pleasantly surprised to find out I was expecting — we weren’t even trying. I had a rather typical pregnancy and Rand was born perfectly healthy at 38 weeks. She passed the Apgar test and had been treated for a mild bout of jaundice by the time we left the hospital four days later.
However, during a routine checkup when she was 2 months old, the doctor noticed that Rand was looking a little jaundiced, which is pretty unusual since she had been cleared earlier. That same day, he ordered a series of tests, including ultrasounds and blood work. They revealed that Rand had an extremely rare condition called biliary atresia, which causes the bile ducts to shrink and fail, preventing bile from flowing properly through the liver, which damages the organ.
We had spent the first months experiencing the joys of being a new family. As a new mother, I was breastfeeding and doing everything possible to ensure Rand was getting only the best. So, to hear that my child had a rare, life-threatening condition was my worst nightmare. Although Cole and I were devastated, we pulled ourselves together because Rand needed us. Our next line of action was the Kasai procedure — where a part of her intestine and liver is sliced off and stitched together to enable an alternate flow of bile. This would buy us time, hopefully for at least 10 years, before Rand would require a liver transplant.
Since I had been working in the medical industry for many years, I called up my doctor friends and was referred to a Dr Tanaka in Kobe, Japan, who is the best in this area. We immediately rang to update him on Rand’s condition, then jumped on the next flight out to Japan the following day.
Unfortunately, her operation failed and we flew back to Singapore after spending a month in the Japanese hospital. For the next few months, Rand underwent weekly blood tests to track her progress — she had to hit a magic number in order to stay in the safe zone. Some weeks, the results looked like they were heading towards that number, but on other weeks, things would go south. Our hopes would shift according to her results.
I knew I had to stay strong for Rand but nothing prepared me for her physical changes. She was looking malnourished — losing a lot of weight and her tummy was growing bigger because she was retaining fluids. It was heartbreaking to see my sweetie in that state.
After six months, the doctors decided it was time for Rand to get a liver transplant. Cole and I were both tested to see if we were potential donors — he was a better match. The day of the operation arrived. A month before, I had to stop breastfeeding Rand to lower her immunity, so that she wouldn’t reject Cole’s liver.
She also had to fast for 10 hours before surgery. I felt helpless when my baby cried her eyes out from hunger and didn’t understand why mummy refused to feed her.
It was very hard to see both my husband and daughter being wheeled into the operating theatre. The gruelling procedure, which lasted more than 15 hours, involved a team of 12 medical practitioners, including Dr Tanaka. I was fortunate to have friends who kept vigil with me the entire time and looked forward to updates from the doctors every three hours.
It was only after opening her up that the doctors realised how much Rand’s condition had deteriorated. They figured that she only had days to live. Because it was so complicated, the doctors had to do a flip liver transplant — the first of its kind in the world for someone as young as Rand — where the liver gets flipped to the other side and the sutures are done in reverse. They also drained 1.6 litres of fluid from her body and patched part of her portal vein (a critical vein) with Cole’s as it had started hardening because of a blood clot.
The doctors described the surgery as a “nearly perfect job”. I couldn’t have been happier and more grateful. We were also lucky that our insurance covered the cost of my daughter’s surgeries and all her treatments as it would have cost us about $1 million otherwise. After a month in the children’s ward, Rand finally came home to us. My mini-me is a fighter and I’m so proud of her!”
Grace Park lives in Singapore with her husband, Cole Sirucek and their daughter, Rand, 3. The couple run DocDoc, a healthcare booking portal.
This story was first published in the April 2014 issue of Mother & Baby Singapore.
biliary atresia: the facts
Dr Tetsuya Kiuchi, a surgeon at the Sing-Kobe Liver Transplant Centre at Mount Elizabeth Novena, sheds light on this rare condition.
- The exact cause of biliary atresia, which starts at around birth, is still not known. Without effective treatment, the patient can die of liver failure before her first birthday.
- This condition, which happens in one in 15,000 births, is most common among non-Caucasian females. Singapore has about four to five new cases each year.
- Common symptoms include a yellowing of the skin and the whites of the eyes, plus grey-to-white coloured stool.
- The primary treatment involves the Kasai operation, but its success is highly dependent on the type of biliary atresia and the area that is being treated.
- Without a liver transplant, a patient has up to a 50 per cent chance of surviving 10 years. With a liver transplant, she has a 90 per cent chance of living up to 10 years. However, a sufferer is required to go for regular check-ups throughout her life.
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