Looking for positive outcome stories after Kasai procedure.

[Gab34]

Hi, I'm simply looking for hope ... My son was diagnosed with BA at 51 days and got kasai at 53. Then he had another surgery a week later for an intestinal occlusion. We are now almost 5 weeks post 2nd surgery. He is clinically doing great. He is gaining weight and following his curve only on breastfeeding and vitamins of course. He is a smiley little boy. Conjugated bilirubin is going down (now 25, it was 87 after surgery) and liver enzymes are going back to normal. But I'm still worried about stools that are sometimes pales, sometimes normals (never white, but they were not before surgery). His eyes' corners still yellow but jaundice is fading. So, we are going the right way but I was looking for positive outcome stories; I mean by that experiences which show that a successful kasai can take time (stool not right away bright or dark and blood test and jaundice that are slowly going back to normal). Thanks for sharing and sorry for my english, it is not my mother tongue.

[vint]

Hi congratulations on the arrival of your baby boy. Our daughter is 12years old. She had her kasai at 6weeks old. She did not do well for the first week and then they told us we would need to go for a transplant however at 9days we had dark green stool. She then had some pale and dark green stool for 2weeks. I breast fed too. She was jaundiced for 3months after Kasai but gradually got better and better. She had a lot of cholangitis in the first three years with lots of episodes of pale stool. After age 3 she has gone from strength to strength. She has her own liver still and leads a normal life on no medication. She plays 3 musical instruments and is top of her class. Her bloods are still slightly elevated but this is now considered normal for her. Each child is different but it sounds like your little one is doing really well. Hope all goes well for you and your family.

[pujatitly in reply to vint]

vint my daughter also had green stool, but soon after surgery she had dark yellow stool, after that green stool, liquid jelly stool, then again yellow, now pale,but not white, after 1 week of surgery bilirubin was 9.somthing and yesday they tested bilirubin was slightly lower than previous report...i m worried about my daughter,,,please pray for my little angel, be in touch with me please as my daughter is also fighting for her recovery...sorry for my bad english, i tried to write correctly...

[pujatitly in reply to vint]

is hickups reduced after surgery? my daughter had hickups for so many times before surgery, but after surgery it has reduced alot...is that good? please let me know vint

[Hidden]

Hi Gab34, I would like to add my congratulations on the birth of your son.

If you would like to view some stories from parents who have a child with biliary Atresia please follow the link childliverdisease.org/blogs... atresia

Also if you would like more information or support you can go to childliverdiseas.org

Very best wishes Jacquie - Families Officer CLDF

[TtlshiwwyA]

Congratulations! My son is now 22 so his Kasai was a long time ago. The jaundice definitely cleared gradually after his operation. He smiled early too!

Wishing you and your son all the best for fun and healthy times.

[Chrisymck]

Hi I had a kasai when I was 9 weeks I did great after it I have lived a more or less normal life. My parents were told I would need a transplant at around 1 however got over 29 years before being put on the transplant list. Got married over a year ago and we are now expecting our 1st child. You can live a normal life after the kasai. Good luck in the future and if you need anything else get in touch.

[pujatitly in reply to Chrisymck]

hii dear, glad to hear your success story, my daughter had kasai surgery few days back, i want to ask that what should be the poop colour soon after the surgery, my daughter had dark yellow stool very soon after surgery, after 3 days green but not dark green, aftr that liquid jelly light green poop colour, and after yellow, after pale colour poop, and soon after surgery bilirubin was 9. something, and yesterday it was slightly lower than before.and what should be weight of the baby, .. so what does it mean,,, please let me know what it is as my daughter is also fighting for her recovery...

[Nehapasoria in reply to Chrisymck]

Hiiii em neha my baby boy is recently operated by kasai operation he is 27 days old i really want to talk to u to know more about the after operation things can we talk on mail my mail id is [e-mail] em from indiaplease reply as soon as possible

[VijendraSri in reply to Chrisymck]

Hello sir we would love to talk to u as our baby in 7th week is going for a kasai

[Gab34]

Thanks to all of you for sharing your stories. It helps me to stay positive and keep hoping the best for my son and our family. It still hard not knowing what our story will be. I keep thinking that one day our baby will tell his classmates that he got bitten by a shark to explain the scar on his belly. I wish you all the best for your kids.

I

[pujatitly in reply to Gab34]

thnks gab

[Huyen_Mai]

Hi, congratulations your son. Hope all best for your son.

My son is 2,5 years old. He had taken kasai at 9weeks old. His Blood tests are still high. Could you pls share experiences take care your child ( food, milk, vitamins). Thanks you.

[Gab34]

Hi,

Hope the best for your son as well. My son is only 4 months so I'm just breastfeeding and give him vitamins (Multivitamins (for A & D), K and E). The medical team told us that he won't need anything else if he keeps gaining weight. He will probably start solid food at 6 months. I don't know yet if he will have a specific diet. I'll ask his doctor during our next appointment.

How is doing your son ? Does he have a specific diet considering the blood results?

[pujatitly]

hii gab34, my daughter had kasai surgery, dr. saying that clinically she is doing well but still in tensn, just hoping for her recovery, her bilirubin is 9 On 11th dec, and yesterdays bilirubin is slight lower than before, but poop colour is still sometimes pale not white, god is with us, everything gonna b alryt with us. because god gave us these little angels and he will do good with our babies, my English is also very poor, i tried to write correctly , sorry if mistaken...please be in touch with me gab as my daughter is also fighting for her recovery, pray for my baby girl,

[vint]

Hi glad to hear things are going well for you guys. Don't worry about pale yellow stools that's OK in babies on milk only worry if its white or pale grey. Enjoy time with your little one. My daughter played Gabriel's Oboe today at a concert. Its a piece of music which is very emotional and spiritual look it up on YouTube its my gift to you to give strength, hope and love.

X

[Arsha36]

I'm 23 weeks pregnant and was told my son has choledochal cyst, we will be meeting up with a peds surgeon and going over the plan of treatment for him. I'm glad to have come across this website and reading all of your posts really gives me hope and strength.