Survival Post Kasai

Date of birth : 9th May 2014

Kasai date/age : 3rd July 2014 / 54 days
Kasai location : Hospital Kuala Lumpur

Diagnosis History:
He Was born fullterm in prince court medical centre. Ackowledge jaundice right after discharge with bili reading 205umol/L. Doctor released us because of fully breatfeed(Thinking it might be the reason why jaundice existed). After went back twice to pcmc for his prolong jaundice we decided to get second opinion from our family paed in klinik pakar kanak2 desa melawati.Doctor Watie suspected darish with BA and have an ultrasound on him. We went back to pcmc with bili reading 186.i insisted for further checkup after paed in pcmc assure us my son’s jaundice will subside even that was 46days of his life. Further ultrasound, they cant find darish’s gallblader and further LFT was done. We were informed that darish is diagnosed with Biliary atresia. We suppose to have hida scan on 1st july. After taking advises from our doctors friend and relataive we’re introduced to dato Z.went to hkl and perform kasai.bili went down at 169 after 7days of kasai went down again at 29 after one month and went down again to 14. On 2nd month of kasai he developed cholangitis with bili total of 61. After antibiotic kicks in drop to total bili of 17 with 9 direct.

Current med : None

Survival Liver Transplant

Elynna was born on 25 Sept 13, her jaundice appeared on day 3 and got admitted for phototherapy at day 4 to day 6. Her jaundice was not clear and her stool was always pale yellow, as the first time parent and first breastfed baby, none of us notice about the abnormal of her stool color. She only get her liver function blood test on day 48 and the result came out on day 57. She was suspected a Biliary Atresia from TongShin Paediatric and got referred to PPUM. She had her kasai on day 61 (25 Nov 13).

Her stool remained pale after kasai, and she developed her first cholangitis on Mar 7 following with the signs of Liver failure (High INR(2.1), Ascending Bilirubin (up to 350+), Descending Albumin(down to 24) leaded Ascites. A Liver transplant is needed in term for her to survive. Her weight was 5kg+ and we were suggested to seek for the living related transplant at NUH, Singapore. With the helps of China Press and Yayasan Namyang on her funds raising, we managed to make our move to Singapore for the process. She got admitted in NUH on 24 Mac 14 for her assessment, her condition getting worst by then. Ascites causing her breathing became fast and suffer. We were told that she need to be stay admitted until her transplant date. My assessment right after hers, it took about one week plus to two to go thru all the tests, check up for myself (Blood and urine test,Chest Xray, ECG, CT Scan, Echo, MRI), meeting with the surgeons, anaesthetist, social worker, psysician and the ethics before the transplant can be proceed legally. She was showing some improvement on her weight, 5.9kg and was free from evers/infections. Although her weight isnt really ideal for the team but they would want to proceed the transplant because they consider if the longer they wait for the weight to gain, the possibility of getting another infection was higher. Elynna got her liver transplant on 19 April 14. The procedure took us total of 13 hours, 9 hours on donor.