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.
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NafeesEU
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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.
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!
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 🙏🏼💕
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.
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.
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
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
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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