Hi, my daughter was diagnosed with BA at 6+ weeks & had the Kasai procedure done at 7+ weeks. We have been in the hospital now 2+ weeks post op. Her liver labs do look better, more color in the poop too... greenish yellow, more or less but never acholic. A major concern is the fluid draining out of the abdomen through the drain put in at the time of surgery. It is draining quite big amounts for her size & weight, as at today 300ml +/-. They suspect a Chyle leak but nos do not say a resounding YES to it, so other worry is, is it the liver, deteriorating or not recovering after the surgery.
Anyone else has any insight into it or has gone through the same with their child?
Thanks
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Pencek
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Hi we had similar, although our daughter had hers at 14 weeks. There was 6 weeks of further stress waiting for all sorts of levels to correct themselves, and it looked very bleak at times. Keep positive and let the medical team continue the monitoring. Our daughter is now 12 years old and very fit and well. Best wishes,
Hi can I know how did she grow after the kasai so by your post I got to know that there was no transplant required. How was her liver enzymes values. How often do you go for follow ups and does your daughter face any isuues physically are any other challenges
My daughter had her Kasai 2 months ago and is just 4 months old. As of now, I cannot give you a long term picture that some of the others can. We are taking one day at a time and hoping for the best for her, whatever that may be! All the best with your child.
she has grown very well, assisted by additional Vitamin K. We had regular check ups up the age of 3 then annually after. They take he blood to see how the enzymes are. She was hospitalised at age 2 or 3 for a few days due to a bladder infection, which is something to avoid because of its links back to the liver. A few days of intravenous antibiotics cleared that up. After the operation she was fed through a nose tube for so long she lost the ability to swallow and chew, but this didn't last long. Physically she is like any other child, and can run a mile in ten minutes without any problems. Also good at gymnastics. We have been lucky as her recovery was excellent, despite what was a very tense and grim start to life. I forget how gruelling the first couple of years were. Very important that you find ways to unwind, and take as much support as is offered.
Thank you very much for the response my daughter had her kasai when she was 50days old it’s been a year now we are having regular checkup’s but she falls sick often like fever and cold/cough her lft reports are getting but it’s a very slow progress doctor has told we might need transplant at age of 5 but they aren’t sure on that, by Gods grace she is a very active and playful child but the start has been very very difficult I know you can understand better, wanted tips from you on how to take care of her food and lifestyle along with the medications
lots of fruit and vegetables are important. Interestingly she can't digest fat. give her a bar of chocolate and she has a nibble and leaves the rest. We have also found it very important to keep her drinking water as regularly as possible.
Now that she is one year old she eats apple,banana,and in veggies she eats carrots,beetroots and wheat biscuits for snacks and we are from India so it’s indian food like idlis and dosas and I also give her home made ceralac,giving her symil mct formula powder as suggested I am adding little bit of sugar so that she drinks it completely is sugar fine or should I avoid completely.is there any food or anything that I should take care of
I’m really sorry asking so many questions but this is the only forum where I get my queries answered
Her recovery has been good, I really hope and pray she stays healthy it’s a very very difficult phase I wish all parents and pray for them too who are going through this pain
Same thing happened to my son, the fluid draining more than required.. please please ORDER the doctor to do the upper GI scan before feeding the baby for any possible leaks. Unfortunately leaks do happen after the surgery.. which hospital are you in? In my case the doctors did a terrible mistake of not taking the scan before feeding and the food leaked in the intestines and got worse . I don’t want to scare you with too much info but dont worry about his liver at the moment it should be fine. Once the doctors confirm there is no leakage then baby should be fed.
Please message me anytime you need more info. Am here to help you . Good luck and take care
Thanks, and we had the same fear... so we did get the doctor to do the Upper GI scan and there was no leak. So that is out of the equation. The other theory is a Chyle leak but even that seems a bit improbable given the triglyceride numbers etc on both fluid & blood. Just hoping it’s the body coping with the surgery and trying to get back to some sort of semblance. How many weeks did it take for your son to have reduced output enough to go home? We have been here 3 weeks post surgery now. Did they need to put him back on TPN and/or Octreotide and NPO? Thanks
Sorry am asking so many questions. Just trying to see what could be done differently for my daughter.
So by the end of four weeks the drain was taken out and he did not have any ascites? I know you said that the biopsy was done but you don’t know how to report it. Do you know if his liver had early stage fibrosis & cirrhosis or had his liver not reached that stage at the time of the surgery?
No problem, you can ask as many questions as you want. I think his liver ducts were fine but slowly deteriorating.. so he might need a transplant.. please keep him in ur prayers.. miracles do happen.. hoping he doesn’t have to go through it.
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