QUOTE: "I think I should share my story and what happened in my life since past few months to you all who as parent, going to be parent or will be parent in future.
My daughter kai xin has prolonged jaundice. When she is 3 months plus old, went for blood test and detected that she has biliary atresia, bile flow from the liver to the gallbladder is blocked. Doc told us that she has to immediately go for operation else her liver will be failure. We was informed that the best time to operate is six weeks after birth. However, when my daughter went for the operation she was 110 days age which means the success of the procedure is poor. Before the operations, the Doc told us that if she detected in later which is 4 -5 months age, they wouldn't advice or proceed for operations because the liver already failure. Doc also told us that if the operation completed within an hour, that means they can't proceed the procedure meanings her liver has failure. Although we are late, we cannot give out any chances to safe her life. So, she went for major operation known as kasai procedure in sunway medical center in Feb. We went thru very hard time and pray hard especially waiting outside of the operation room. The 1st hour is terrible to pass because we hope that the operation can be proceeding. God blessing the surgeon can proceed the operation for my daughter which took 3-4 hr. After the procedure, my daughter was in CCU one night and then change to normal wad after 24 hrs and stayed in the hospital for 9 days. Although we are very tired but most important and luckily the surgeon still can continue the kasai procedure for her to safe her.
After the operations, her motions slowly change from pile color to light yellow. Her jaundice still there. We went for follow up check up every week. However, the improvement is slow and Doc told us that if after two months from the operation, her jaundice still yet disappears and motion color not consistent with normal color meaning not good. We can't just wait until the second month check up again for the result. Eric's colleague suggests seeking for 2nd opinion and her relative who is Prof in HUKM has introduced a Prof of Paediatrics Gasteroenterology/ Hepatology and Nutrition in UM to us. It is not easy to meet up those Prof especially in UH without appointment. Thanks god, Eric managed to find a contact number via internet and 1st time call managed to talk to the Prof Lee via phone. He advised to bring my daughter medical history to meet him. When Eric 1st visit to UH, the queue is so long and have to wait 40+ number only will be his turn. Eric talks to the nurses that just want to meet up with the Prof for while as the Prof asked him to see him. End up the nurse as him to sit at somewhere where the Prof will bypass. Luckily Eric had seen his picture on internet then can recognized him and approached him. The Prof Lee is very nice and sits down listen to Eric regarding my daughter’s condition. Finally, we managed to make our 1st visit to Prof Lee in UMSC is 6 weeks after her operation. Upon examination, she still has moderate jaundice and her stools remained pale. Her liver was enlarged. Doc told us that not to give out as there are babies with biliary atresia can be recovered with strong nutrition and advice us not to discuss about liver transplant at this moment. When we heard that still got chance to recover, we are so happy. She has not been gaining weight properly after the surgery. Therefore, Prof has introduced her to apply vitamin supplements vitamins, vitamin D, vitamin K, vitamin E, UDC, MCT Oil, a special die formula (Alimentum from Abbott) which taste is terrible for my daughter as this is the best formula which can help her absorb easily. This formula is not easy to find and limited, only available on selected Jusco. We have hard time to feed her because the taste is not nice. Subsequently, we brought kai xin for check up weekly at UMSC. Her weight slowly has gained compared to previous and little improvement on her jaundice. The Prof Lee is the best doctor that I never seen before. He provided us many advice and spirit support. We can contact him anytime as and when we has any quiry.
Unfortunately, kai xin was admitted to UMSC hospital on April 21 for an episode of high fever for 8 days due to infection on her liver. Based on ultrasound, she is showing features of liver cirrhosis with minimal ascites. That means she is showing signs of liver failure. Liver transplant is required to save her. Baby with biliary atresia who has an unsuccessful kasai operation usually die of liver cirrhosis or complication at median age of 15 months. Therefore, kai xin needs an urgent assessment for suitability for liver transplant.
The only available liver transplant service available in Malaysia is at selayang hospital and usually will only accept children with body weight of 10 kg. However, kai xin is highly unlikely to achieve that kind of weight to enable her to be listed for liver transplant. Another hospital that can be considered is National University Hospital at SG. The liver transplant team comprised of highly skilled, multi-disciplinary team. Most important they generally accept baby who need liver transplant with weight 8kg. In order for her to gain weight adequately, Prof has introduced nocturnal feeding via nasagastric tube. We have to feed her every 3 hours using the NG tube as she started ill to drink milk. She must gain weight then only can go for the liver transplant.
We had decided to go to NUH for the liver transplant although the cost is very high about SGD 200K. Liver transplant is the only option for her to survive. We contacted and liver transplant coordinator in NUH and make appointment with them. We had visited to NUH on last week. We met up with the Dietitian, Liver coordinator, Hepatology specialist and Surgeon at NUH within half day. They are very professional and performed the first time clinical check up for my daughter. The pre-assessment for liver transplant is required to be arrange as soon as possible for my daughter and me or Eric who to be the suitable donor for kai xin. We have arranged to go to NUH for pre-assessment which required 1 week admission in hospital on early june 2009.
Unluckily, she sudden has fever again on last Friday and admitted to hospital again. Based on latest blood test result, her bilirubin has increase again. Her stomach getting bigger and bigger from day to day. We are very worry on her. She needs to stay at hospital a week to clear the infection. We hope she can recover from infection soon then we can make it for the next week pre-assessment in NUH. Else, we have to reschedule to another week to SG. Nothing to gain while waiting. The risk for her is variable and increasing.
As parent, we hope ourselves suffer rather than she suffer. She is a fighter. Since birth until now, she has been performed many rounds blood tests, She is a baby girl likes to talk and smile. She brings happiness to us. Liver transplant is a big challenge and long journey we need to go thru with her. We pray hard for her. We really hope she can be healthy baby/kid like others. No matter how tough we had went through and need to go thru in future, we strongly believe she can overcome this.
Friends, please pray for my daughter. She need wishes and lucks from many people. Many many thanks and much appreciated from my family" UNQUOTE
Sincerely,
Huey JIng & Eric
For follow-up of Kai Xin's latest development, kindly visit here.
Dear fellow readers,
A fund has been set-up for Kai Xin with the following bank account details. For those who are keen, kindly deposit your donations in favour of:
Name: Loke Kai Xin
Maybank Berhad A/C No.: 1-14013-213313
Note: If you are transferring via ATM or Maybank2u, you will see the name Lee Huey Jing appearing for confirmation instead.
Thank you for your kind donations.
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