Biliary Atresia Treatment Overseas?

11:28 PM

On 11th September 2014, the newspaper portal, Sinar Harian highlighted the plight of a 2 years old child with biliary atresia. The family is seeking funds of RM 150,000 to get treatment in India, possibly to get a liver transplant.

Biliary Atresia?

Biliary: The bile duct system.
Atresia: Absence or obstruction of an orifice.

Basically it means that the tube (duct) to transport bile from the liver to the small intestine is obstructed or absent. If not managed early, it can cause irreversible liver damage.


Bilirubin metabolism diagram
TWO things crossed my mind after reading the article.

1. Why the need to go to India? I thought Malaysia has a hepatobiliary center in Hospital Selayang.

2. What happened in the last 2 years? Prolonged jaundice should have been detected in the first month of life.



Treatment Overseas or Private Center

The general sentiment in Malaysia is

"Treatment overseas is best. Private treatment is second best. Treatment in government hospital is useless because it is cheap."

I am NOT implying it on this family at all because I don't know the circumstances that they went through to make the decision to get treatment in India. However, it is increasingly common to see patients who can't afford private healthcare to seek private healthcare FIRST even though they have easy access to public healthcare. IT IS good to seek private healthcare if you can afford it but public hospitals and facilities are there to ensure EVERYONE has access to almost free affordable healthcare.

The thing is liver transplant and Kasai procedure (if the biliary atresia (BA) was detected much earlier) CAN be done in Malaysia. According to the honorable Director General of the Ministry of Health, Datuk Dr Noor Hisham Abdullah, liver transplants can be done in Malaysia for less than RM 500. (DG's press statement). So, why need RM 150,000 to get treatment overseas?

Portoenterostomy (Kasai)
According to a study done; Outcome of biliary atresia in Malaysia: A single centered study, it concluded that Malaysia's outcome compares favorably with other international figures. And the outcome can be improved by increasing awareness among health professionals on the importance of early referral. So, Malaysia heathcare should be good enough right?


Prolonged Jaundice

Almost every week, I will get at least one parent who will create a big fuss whenever I tell them that their child will need to be poked to get blood for total serum bilirubin.

"Kesian la doktor. Setiap hari dah cucuk anak saya."

"Cucuk, cucuk, cucuk. Anak saya ni bukan bahan eksperimen tau doctor!"

And I always tell them;

"Do want your child to sakit now or for the rest of his life?"

I wonder what happened during the first month of the child's life. Isn't it standard procedure to get a total serum bilirubin if the child is jaundice at day 14 of life. Even if that was missed, there should be another routine examination (RME) at 1 month of life. Did some one missed out on obstructive jaundice symptoms?

1. Jaundice
2. Pale stool
3. Tea coloured urine

Its either a medical staff missed a crucial finding OR the child was lost to follow up. It is not fair to blame anyone at this instance but the public need to understand that all those frequent appointments and lengthy wait at the maternal and child health clinic (MCH) is for the benefit of a growing child. Us doctors and all the medical staff just want the best for the child. It is not fair for a child to suffer because of a parent's misjudgment.

There's a reason why jaundice is no child's play
I wish all the best for the family. Hopefully the authorities can reach out and help this child get treatment locally. The D-G did a great job with the press statement. Unfortunately, the statement did not get as many shares or likes as the Sinar Harian article...sigh.

MOfrust

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1 comments

  1. Ideal window period for Kasai op is <60 days. This only happens if you get straighforward, classical obstructive jaundice presentation that healthcare workers can pick up. Making matters worse, some even tell parents that pale stools are normal and will go away. Of course, borderline cases present later and often with liver failure.

    At 2 years, child needs liver transplant already. Some surgeons still perform Kasai on older children but ultimately it's going to fail.

    And I guess, better to find a liver in India than wait for compatible liver donor to appear in M'sia?

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