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Children's Liver Disease Foundation
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BA - Kasai Procedure at age of 10 Weeks

Hello im from Pakistan and my first son/baby has liver issue Biliary Atresia. Doctors has done kasai procedure at age of 2 Months and 15 days almost at age of 10 weeks. I dont know if they has done very late or still its okay.

3 days before they did the kasai procedure (19/02/2018) And still we dont know its success or failed also doctors are not saying nothing.

They say for wait Only! And baby is still admitted in hospital. They told me if KASAI procedure is success so still will need liver transplant at some point in his life.

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We are worried too much dont know why God chose our baby to give this problem.

If anyone know any reason what it happend so also please share.

Please pray for my little angel.

As poor government and country PAKISTAN

Everything i need to do is in private hospital and its too much expensive.

Please give me some feedbacks

I wish and will pray for my baby and for all of you to get solve your baby problem and get good health.

Sorry for my poor english.

19 Replies
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Hello I am really sorry that you are going through this! My son is 10 months and has biliary atresia. I remember feeling exactly the same as you. The worry does not go away but it does get easier. It can take up to 6 months to know if the Kasai has worked. We knew quite early because his jaundice disappeared and his stools went dark green. Try not to worry about a transplant yet. If the Kasai works it could be 5, 10, 20 years before he will need one.

Xxx

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How old is ur baby now?

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He's 10 months and really well. X

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Hello NafeeEU,

I agree with Ktleesond, we all had the same feeling. We were very lucky to have the best surgeon and liver specialist in NYC. But they were 5 hrs away. We found out that the kasai was successful after three months. I know it's extremely hard to wait. But you'll get through this. Sending lot of prayers for your little one. Little one is suffering from cholangitis now, but we mothers need to be strong for our babies. We are their world. Be strong!

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This app/web really help me too much

In my hard time i found ppls related to the same case and conversation to all of you make me feel good

Thanks to all of you to support me

I will keep updating my status when i got any change in my baby

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Thank you for your words of advice! My son was diagnosed with BA on March 5 2018 and the Kasai was performed. Every day i wonder “how come my baby? What did he do to deserve this? He’s only 3 months old. “ your words are helping me keep it together for my son. Every day is hard but it is getting better. I just wished this disease never existed. All our babies are too innocent to deserve this. But i am a believer in God and perhaps God is calling our babies in for a mission. Thank you again Hope-faith 🙏🏼💕

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Hi, my son has BA and Kasai at 24 days old, he is now 5 and is a lively healthy boy with no other issues. The worry does ease with time, because you need to live a normal life for your baby. Unfortunately, because the Kasai procedure has only been around 35- 40years they don't know if someone can live their whole life without transplant, but we can only hope that with advances in medicine that maybe it will be possible one day but try not to think about it now just enjoy your baby they are very tough. It's hard but I was told by someone else in the hospital when I was feeling like you, that if there are odds, then someone always has to come out on the good side and you have to hope that it will be your baby. Congratulations and I hope you get the good odds.

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After kasai after 4-5 days stool colour was green and dark and today after 9-10 days again white. :(

How long time it take after kasai?

After how long will change stool colour? White to other colour?

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Now after 1 month estimated

Stool is Yellow

But eyes and skin still yellow not like before

But also not gone

How long can take to change skin + eyes colour

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Hello there nafeeseu, as our surgeon say, the skin and eyes will take sometime for it to go back to the normal color, sometime it take more than 1 month, first the skin will heal first then last will be the eyes. So no worries, it will go back to normal color soon. Just keep on observes your little angle, make sure he didn’t get any fever.

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Hu yuie Fever is a bad sign or very bad?

Our baby has a little fever once a week

But we give medicine and its fixed

:(

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Mild fever is ok, if high fever and it’s not going down even after being given medicine and it’s a bad sign, that is sign of cholangitis. But no worries cholangitis can be fixed.. with some antibiotic through iv line

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Hi, now every night or every second night he is Getting Fever 99, 100, 101, or 102 and :(

On day time has low fever

But at night yes high :(

Poop Colour Yellow!

Eyes Yellow

Skin Yellow

We dont know how is situation!! just reaching to 1 month After Kasai!

We are already giving Third Generation Cephalosporin Antibiotic

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Stay strong NafeeaEU! 🙏🏼 I understand the frustration and cannot stand the waiting period.

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Doctor has checked told baby dont has cholangitis,

Has fever because baby is week and some other reasons!

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Anyway im noting baby belly size is increased belly is little bit more fat now!

How is this and why anyone has any idea when the belly size will come back to normal?

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I’m glad baby doesn’t have cholangitis! Praying baby is well soon. Also i was planning on asking the same belly question. Hope someone will let us know

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Hi, belly getting bigger in case of our kids with BA could be as simple as gas or ascites ( fluid build up in abdomen). If you feel that baby isn’t that gassy and belly is getting distended compared to earlier then speak to your doctor. This def needs to be addressed. Hope your son is doing ok. TC & hang in there.

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Baby is no more 😭😭😭

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I am so sorry for your loss. May God give you the strength to bear this great sorrow. May your baby Rest In Peace.

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