My daughter is 6 weeks post kasai (9w... - Children's Liver ...
My daughter is 6 weeks post kasai (9weeks old) and her stools have gone pale, anybody with any experienc? Is it a sign of kasai failure?
My little chap had Kasai five years ago and seems to be able to do many colours in one poo and they can vary from day to day quite dramatically. The docs always seem happy if there's some colour when I've asked them. I would have a chat with a CNS.
They are a pale shade of yellow. Keep varying just wondered if that suggested bile wasn't flowing as it should be. They used to be bright yellow. Her blood results keep varying too which concerns me. Thank you for your response though, much appreciated dont want to keep phoning our liver unit! X
Hi, my daughter had her kasai last week, ive seen dark green ,and now pale yellow. I am desperate to see bright yellow. Can you tell me about your experience please? How were the first poops after kasai?
Hi, where did your daughter have her kasai? How are her poops? Have you joined the liver group on Facebook? Unfortunately Tilly deteriorated pretty fast post kasai and ended up being listed for transplant at 4 months and transplanted at 10 months. She's doing absolutely incredible now though and just turned three. So proud of where she has come xxxx
I am at miami childrens hospital, my daughter is currently 7 weeks old. She barely looks jaundiced. Last tuesday was her kasai,im still in the hhospital , enzymes liver going down, not the bilirrubin yet, i dont have Facebook. Can you please share your experience after kasai, dit it work at first?
Im 24 yo, my first baby, im living a nightmare right now,
It is a scary time, I too was 24 and first baby not knowing what on earth would happen to her she had her kasai at 18 days old and was found to have cystic biliary atresia. To start with she cleared most of her jaundice visibly but her liver functions still were not great. Her blood results were very up and down in the first 6 weeks and then she started becoming more jaundiced again with pale poop. She was admitted to hospital at 3 months and stayed for a month where she developed ascities and ends up being transferred to our liver hospital. I know people who's little ones kasais have been a success and are doing great so don't think what my daughter went through will be what happens to your daughter. There are many contributing factors to whether the kasai fails or not including weight that's a good indicator. Hope you get discharged soon so you can enjoy your baby girl. X
Thanks for replying, i dont know any parent whose children have this. Did your daughter ever had bright yellow poop after kasai? Mine varies, sometimes yelllow, sometimes greenish but.still pale, her direct.bilorrubin is still in 4. They want to discharge me but im scared, how will i know if kasai worked? Aquadeqs vitamins shes taking colors the poop, even more confusing.
Hello, my daughter also has BA and she had her kasai at 6 weeks old... He poo varied in colour at first and some were paler than others.. It's a scary time but you will know if there is a problem, you need to have confidence and if you are at all worried then phone the liver ward that's what they are there for..... My daughters kasai worked and she is 2 years 6 months and is doing amazing.... Have faith, stay strong and whatever liver card you are delt you will get through it xxxx
Hi, my daughter is 2 weeks post kasai, her poop also varies in color, but her enzymes keep going up, they ordered some genetic tests, i have to wait fo the results. For how long did the color of the poop varied in ur daughters case and how long took for ggt to go down?
Imogen's poo still varies now depending on what she has eaten.... As long as it's not the same colour as it was before kasai and it gets darker after the nxt few poos I would say it's fine.... If there is a problem you would know about it, try and trust your instinct xxxx I was called the poo lady by my friends 😍
how is your baby now? im in the same boat as you are. My daughter is 4 weeks post Kasai and im totally obsessed with her poops. Lab isnt until next week, last labs eberything is going down but ggt ia fluctuating. Prayers for u and lil one ❤️
Hi my son had a successful Kasai at 24 days old, he is now 4 yo. He is a normal, energetic, bright boy. We still laugh at remembering how poo paranoid we were, in the hospital we lined up all of the samples so we could compare before and after colour until a doctor came along and politely advised that it wasn't healthy for us and binned them. They were initially quite dark after the kasai and got lighter but have always had some colour albeit it changed from day to day. If you are worried speak to the liver nurses, they are there to advise and are very experienced.
It was the most difficult time in my life, and it took me a long time before I could talk about it without crying but it gets easier, although the worry never ends it just changes. And when they get to 4 and you are fighting to get them into bed, you don't think about the BA, just about how time flies and that you can't believe how quickly they grow into a cheeky, opinionated little monkey 
hii rebeca, can you please tell me what is the poop colour of your baby after kasai surgery...how many days it has taken to become bright yellow colour, , ,after kasai,,,please reply, because my daughter also had her surgery
Hi rebeca, My name is April frim the Philippines, my son had his Kasai last week as well Feb.24, 2018
Ive seen dark green after the opertion after the first feeding Im worried to see its back to pale yellow..
I havent spoke to his surgeon as of yet, did your doctor said if its normal?? Did they Advice you to change a formula milk.. I really dont know what to do now. Please help
Don’t worry my baby also like that, after 2nd feed it will change to yellowish color, but if after next feeding and your bby poops still showing the same color, u really need to talk to your dr
Shortly after Bertie's Kasai I would email CNS with a few questions at a time several times a week. They don't mind!
My wee boy had a Kasai 9th January and since his Kasai his stools have vary also from day to day, when we had our last appt they were happy with this. I think we just panic when we see pale stool. Hope you are ok know how worrying and new all this is
He had his Kasai in Birmingham Children's Hospital Ward 8 they were just amazing :-). am sure like me your mind is racing and just like a roller coaster. Yes as long as they are not white like previous to Kasai, jacks started to really colour when he started spoon feeds at 5 months and the colour very much depends on what they have eaten. But don't be afraid to ring liver direct they are excellent and don't feel any question feels silly that's what they are there for We actually meet with dr McKenrnan from Birmingham tomorrow he is over dong a clinic in our local hospital, bit anxious and nervous as we haven't seen him since 4 weeks post jacks Kasai so will be relieved to get this appt over with to see if they are happy with him. He is doing fantastic and bloods all coming down so hopefully figures crossed it stays like his take care and don be afraid to ask questions we are all going through he same thing :-)) it's all a learning process
Our daughter had hers at Birmingham too! They were amazing on ward 8 couldn't fault them! We have just had her brightest poo for almost three weeks!! I'm so glad I found this forum online was starting to think there was noone I could talk to who understood what we are going through!! How did you get on with Dr McKenrnan, was he pleased with Jacks progress? We have Tilly's follow up appointment with Dr Gupte next month, had surgical clinic two weeks ago! Her bloods are stilly varying which worries me but not out of the 'normal' ranges post kasai apparently! Just wish they would come down a bit. Are you local to Birmingham? X
Hi there. I know you had a late post. Anyway, we are in the same boat but my daughter had her kasai just 3 weeks ago. Her bloodtest are also coming down. But still praying that everything will turn out well.
Jack had his kasai for passed 2 years now... how is he doing recently?
We got on brilliant yesterday they were delighted with his progress, and will not be seeing him again until next June will still worry about him though, but so pleased to get it over us when he had his first appt 4 weeks post Kasai they weren't pleased as he still remained very jaundice so they couldn't get over him yesterday Bloods will vary the main blood is the billyrubin level the others will go up and own 6 months post kasai. This website is great I was the same very much other people didn't understand 
so so emotional.
We were from Ireland and jack was my fourth baby to leave my other children behind (5,4,3) to go to bermingham not knowing what was wrong with jack was a nightmare but ward 8 were so supportive. I have just completed my local marathon and raised over 1100 pound for ward 8, it was just some thing to take my mind off what we and jack had just went though.
I am here if you need any questions answered I may not know them all but understand exactly what you are going through. Is Tilly your irst baby. Xx
Oh wow I'm so pleased for you all, that's fantastic news!'i bet you came away with a big smile on your face! Well done Jack. Same thing happened with us, Tilly remains jaundiced at present bilirubin levels are lower than pre kasai in double figures now (were 300+ before) but still have some way to go! I am hoping for a miracle in that things will gradually start working more and more!
Gosh that must have been awful for you, how old was jack when he had his kasai? Well done you for raising that amount of money thats fab! My partner is doing a marathon next year with some of the funds raised are going to ward 8 just can't thank them enough for what they did.
Thank you for the support knowing that there is someone who has recently been through the same helps a great deal! Yes Tilly is our first baby and an absolute dream!! She was 10 weeks old last Thursday but seems so much older after everything that's happened!!
Hope jack continues to make good progress x
Try not to panic jack remain very jaundice for at least 3months post kasi which I really worried about, but the billyrubin was coming down it was 183 when we come home just after Kasai he, continued to get bloods done on a weekly baisis and then it went to monthly and at his last bloods 5weeks ago his billyrubbin was 8.1 and its every three months he will get bloods done they told me in August if it continues to stay the ways it's going it can go to every 6 months Jack was 7 weeks and 5 days when he got his Kasai, you are very luck Tilly was picked up so early. Jack was unfortunate and his check ups fell over Christmas and they left it to the new year to review him, I had him in hospital 3 times in one week and they sent me home told us he had a reflux I kept his nappies to show healthvistor and midwife but they told me they were fine, I think because BA is so rare gins aren't looked for enough After jack got his Kasai The dr told us Jacks liver didn't look to have been damaged that was the best news we could have wished for
Aw she will come on fantastic don't worry it's still very early post Kasai, do you know they re just wee angels and fighters jack is just so so special to me our wee hero and absolutely spoilt by everyone and just loves loads of attention :-)). Do you live close to BCH?
Stay in contact will be thinking of Tilly xxxxx
I'm so thankful you replied to my question, everything you have been through sounds so familiar so thank you for that! Wow you really went through it then with your midwife etc. we are thankful that our midwife was proactive. She sent us to a and e when Tilly was 3 days old, we were then admitted to A children's ward in Derby children's hospital for 5 days when they picked up Tilly's high liver scores and the conjugated bilirubin. They were then in contact with Birmingham who asked for numerous tests and called us in when she was 12 days old. Then when she was 2 weeks we were told by the surgeon she would be on emergency op list for the following Monday so we got let home on weekend leave. Tilly was 18 days old when she had her op! I so wish there were more checks that could be done on ultrasound scans etc but hey we were very lucky our midwife picked something up!!
Tilly is our little miracle and treasured by everyone in our family it's been a crazy time since her birth but strangely I wouldn't change it (obviously would prefer to not have BA) but that's the cards she was dealt and we have to move forward. She's just perfect to us. It's so heartbreaking though isn't it especially when we collected her from recovery but my aren't they strong and the eat but, they won't know any different and won't remember it! We are lucky and live just south of derby so only have 45 mins to BCH.
I will most definitely stay in contact and thank you, take care and lots of good wishes for your Jack and my Tilly (our two fighters) xxxx
Yes try and stay positive they are wee fighters and will never remember what they went through, and we will never forget it. I am on fb if you want to add me Lisa McAleavey
Hi All,
My little princess had her Kasai at birmingham childrens at 4 weeks old, all went well for a few weeks, bloods was looking good she was gaining weight and so on. We then started to notice her stool going pale and her lft's went eratic,we was admitted into hospotal for 10 days of anti biotics to try and treat colangitis. Ever since then she has deteriated with her billi now in the 300's and looking quite badly jaundice! We was told her kasai had failed and liver transplant was her only option, we have just spent 3 days on ward 8 learning how to use feeding pumps as her weight gain has slowed down. My princess has a transplant assesment arranged in 4-6weeks time and then we just wait for the call. I hope all is well with your little ones and stools can vary in colour quite alot try not to worry, best of luck
So sorry to here your little girls kasai has failed.... I can't imagine how you felt when they told you this.
My little boy had his kasai at Kings just over 8 weeks ago at 7 weeks 5 days. He seems to be doing well apart from he doesn't feed very well so we are currently feeding small amounts every hour or 2. We must be doing something right as he is gaining although very slowly. He is also being sick a lot due to reflux which isn't helping x
I'm so sorry your daughters kasai has failed, I believe our daughter is on the same route, similarly everything was well for few weeks then all changed re stools and LFT's birmingham said they were 'abnormal' so we are currently in hospital with her having a course of 10 days iv antibiotics for cholangitis also. All the blood tests in hospital since the start of the antibiotics haven't really changed which concerns us. The only good thing is she seems to be gaining weight really well at approx an oz per day. She is however pretty jaundiced again. Will be keeping my fingers crossed for you and praying you get that call soon take care please let us know how she is. Xxx
Your post has brought back some memorys of when we was in for anti biotics for 10 days, in the end birmingham sent us home woth ciprofloxacin to take. Everything you said was exactly what happened with Amelia. There is no point in worrying to much (easier said than done) as we have found out as she will be taken care of by some of the best doctors and surgeons in the world! Its good your little one is gaining weight, amelia has only struggled since she has been weened and struggle to get calories into her as now she prefers finger foods and jars to milk. Friend us on FB, my name is Mike Harrison and my Partners name is Kirsty Barritt you should be able to find us if you are friends with the CLDF will be good to talk more
Hi, I can't seem to find you on FB? I am Lottie Hill if you can find me? We are now in Birmingham as Tilly has ascities she has assessment for transplant on Tuesday and we are meeting with specialist nurses tomorrow. How is Amelia have you had any further news? X
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Thank you.
My son is 22 years old this month; he was born with BA. He is Kasai only, but was listed on the transplant list for 7 years. He had everything from Cholangitis, ascites, portal hypertension, internal bleeding (he almost died twice), and he now has hepatopulmonary syndrome and gets brain fog regularly as a result of having a TIPSS. In my opinion, he is doing well considering. I'm not sure if he will ever be able to live alone as he sleeps a lot and is very difficult to wake up. His body is tired of fighting. As far as stool colors go, you really only have to be concerned about chalk white, bloody, or black, anything else is GOOD. If you ever have questions, feel free to ask. You can also contact me on FB at Rhonda Dutcher MacClain, although I am rarely on there anymore. Try not to worry ladies, God cares more about your child than you do and He wants to use this for your child's good and the good of those around them. You never know what may happen as a result of your child having this illness. Put your trust in Him and He will show you great things if you open your hearts and minds to Him. Sometimes it doesn't seem fair, I know, but my family wouldn't be who they are today if it weren't for BA - as horrible as it is. God's blessings on you all.
Hello Everyone
my son is 2 months after Kasai. He was 3 months old when had the surgery. His poo is still pale yellow or pale green. It never has full colour - this is the same colour like before Kasai. Does it mean the surgery doesn't work? Is there still any chance that the colour will improve?
