Biliary atresia

[Ktinsley90]

Hello, my daughter is 11 weeks old and was just diagnosed with Biliary Atresia... she was admitted into the hospital last night, and is scheduled for surgery today. First a colangeogram, followed by the Kasai. I am a total mess and just was looking for some words of encouragement. Her direct BR is 9.9 and total of 12.

[Zuhal]

Hello i know it’s hard but I am sure she is going to be fine when they are young they are more stronger and I read a lot about that BA operations are mostly successful even if it’s not there is always another solution like liver transplant which is not end of the world they are really good at this sort operation so try not to think too much and stay positive and of course praying god is always with us

Good luck

[SethB21]

Hi. Where are you having the surgery. 11 weeks is still young so that’s good. My son is 5 weeks post kasai and he was 19 days old when he had the procedure last month in Miami Florida. His bilirubin is higher now then when we left the hospital which has us worried but dr said that it could be too soon to tell. Good luck!

[Ktinsley90 in reply to SethB21]

Hello. We are in Camden, New Jersey. She is in surgery now as we speak. She had labs done last night and her direct BR is 14, when we found out something was going on three weeks ago her direct BR was 9.9

[SethB21 in reply to Ktinsley90]

I know exactly what you are going through hang in there. Cholangeogram is just to confirm the biliary atresia. She is still young which is very good for the prognosis. Hang in there and we should keep in touch for moral support going forward as we have similar aged children. Again best of luck and hang In there first few weeks are hard but it gets easier

[M45984371]

Hi our daughter was 14 weeks at time of kasai. The following 6 weeks monitoring her recovery over Christmas were truly draining, horrible, and touch and go. Make sure you have good support during this time. (We did). 11 years later she can run a mile in 10 minutes and is a little wonder. This IS a tough time, good luck, you are not alone.

[YBiliaryAtrecia]

Hi, at this time you need to stay nothing but positive. Your daughter needs a lot of positive energy from you. Like M45984371 says this is tougher time and we all been through this. You just need to give the little one much needed love and care.

My girl had her kasai at 5th week and eventually down the Transplant route. She is 2.5 years old and she is a madam in the house now. She is the fastest person in the world to tip over anything found accessible keeping us on constant vigilance.

I wish you lots of strength and love. x

[vint]

Just seen your post and hoping all is OK. Our daughter had her Kasai at 60 days old. It was the hardest time of our lives but she is now 13 years old and living a normal full Life with no meds and her own liver. It took many months before her BR came down. Thinking of you and sending hope and hugs. Just post if you need any help, support or just need to rant!

X

[Bentrij82]

Hi!!!

Be strong and think positive. Babies are stronger than what we think. Our son is 6 months now and had a Kasai at 2 months and transplant at 5 months plus other minor surgeries. He keeps surprising us with his strength and amazing attitude (he is always smiling).

It's really tough moment to see them go to surgery and wait until you can see them but everything has a solution!! there will be some ups and downs but with time things will get better and your daughter will have a normal life.

We are here to talk if you need! And to me it has helped to read all the success stories in this forum, talking to my husband, friends and family, even to a psicologist they have at the hospital. I cry when I feel like crying.

All the best!!!!

[Amandawallace2781]

Hope the surgery goes well. It’s such a difficult time for you. We’ve been through the same. My little girl had her lasso at 3 weeks old, the BA was diagnosed at the earliest time possible and she had the kasai straight away but unfortunately still ended up needing a transplant at 7 months. She has been through so much but at 15montgs now is doing really well. Stay strong for your little one. She will surprise you with her resilience and strength. Good luck x

[SethB21 in reply to Amandawallace2781]

How did you know they kasai was not working? My son had his 5 weeks ago at 19 days old but his bilirubin is now higher than pre surgery so we are worried

[Amandawallace2781 in reply to SethB21]

Hi SethB21,

Our baby girl took a while to improve after the Kasai, her bilirubin was up and down but it did eventually start to come down. About 3 months after the Kasai it was down to its lowest of about 20 but she was still slightly jaundice and she was struggling to put on weight. She then deteriorated quite suddenly, started to look more yellow and BR shot up to over 100 within a month. Firstly they tried treating her with a variety of anti-biotics for colangitis, she was in and out fo hospital and on IV antibiotics on the run up to Christmas last year, only got let home for the day on Christmas Day. When it looked like that wasn’t working the Liver team started all the assessment for a transplant. By the end of January she was full of fluid and couldn’t keep anything down, she wouldn’t drink. She was admitted and put on a continuous NG feed and listed for transplant. She had a live donor transplant from part of my liver in Feb this year but it went wrong and so she was re-listed for an urgent retransplant which she got a week later. To be honest it’s been the hardest thing we have been through, she has not had an easy ride even after transplant, but at the end of the day it saved her life. It’s never going to be easy living with this, she will always have to have medications and always be at risk of infection and of rejection but you get on with it and make the best of the situation. She is an amazing beautiful and very happy little girl, always has the biggest smile, she melts my heart everyday and I wouldn’t know life without her.

Hopefully your little one will be ok, it’s early days still post Kasai, but if it comes to it that he needs a transplant don’t be afraid. You’ll get through it. There will always be support for you.

Good luck xxx

[Amandawallace2781]

That’s was meant to say Kasai at 3weeks!

[Carol1663]

Don't be afraid to take all the help and support offered to you. We are currently looking forward to our grandsons second birthday. His mum had her Kasai at 12 weeks and had a transplant at 7. She is now 32 and living a normal life with her husband and gorgeous little boy. I know it is all so new and scary, but stay strong. I hope all goes well for you and your family.

Best wishes

[Mandamoo2311]

Hope your baby is doing well after kasai? Just to let you know my son has BA he had kasai at 7 wks old he is now a big boy of 17 and has led a normal life playing football badminton tennis !

This is such a terrifying time for you but just want you to know there is fantastic doctors who do a tremendous job and yes it's not easy having a child with illness but it makes them all the more special

Good luck and. Best wishes

[Hidden]

Hi There, I see that you are in New Jersey but you can download our information leaflets from our website by going to: childliverdisease.org/ I wish you every luck and best wishes - Jacquie

[MadiHassan]

Hey

I am also having same situation with my son, still confused and scared to get him the surgery , but one think my friend, there's nothing to get worried ,get her treated as soon as possible , as there's no other way .

Be brave ,and save her from future complications caused by this ,

God be with you ,

[christinad702]

Please go get a second opinion. Maybe STANFORD UNIV