Weight gain in BA babies

[Heyladydee]

For those with BA babies, did your child have issues gaining weight after Kasai surgery? Is it a long process to get baby back on the grid regarding weight and height?

I am asking since my son gained 1/2 pound back in a week(2 weeks after surgery). Want to know if this is what your babies experienced also?

[NafeesEU]

I dont know much! Our baby was having weight of 4.5 kilos before surgery after surgery due to temprature etc went little down!

Now after 1 month of operation again has 4.5 kilos

Hight is increased slowly

But about weigjt we r waiting more

[Heyladydee in reply to NafeesEU]

Sounds like we are on the same boat! On April 5, it will be exactly 1 month since operation. And baby boy is almost to the weight he was before surgery. Praying for our babies!

[Jampotjim]

My boy is now 2.5 now and had his Kasai @ 8 weeks. Yeathe weight gain was slow as he was off the charts until about 5 maths but now at the 30th %.

He eats as much as his 4 year old brother and has energy to burn..

[Heyladydee in reply to Jampotjim]

Oh wow! Thank you for the info. I feel better about my baby boy gaining slowly. I’m just hoping the Kasai worked bc he had it done at 10 weeks( 74days old). I read most progress at 8wks or younger for kasai. But at least my baby is gaining weight back slowly. Thank you again!

[vint]

Hi

Our daughter gradually gained weight after her Kasai and after the age of three really thrived. We now have the opposite problem trying to keep weight low as she has a massive appetite. She is now 13 years old and is 1m 67cm and on the 99th percentile for height and weight. This means if you put 100 children of her age in a line from smallest to largest she would be number 99 in the line!

My advice would be to try not to worry which I know is really hard! All children whether they have BA or not grow and gain weight at their own pace. As long as the medical team are happy and he is not losing weight all the time just love him keep feeding and keeping him hydrated.

Hope and hugs to you and your family

X

[Heyladydee in reply to vint]

Thank you so much! Sending lots of love your way for continued progress on dear daughter!

[Heyladydee in reply to vint]

Vint, at what age did you daughter have the kasai? And does she still have her native liver?

[VijendraSri in reply to vint]

Such a nice message....we would like to know more on your experience.. following is my maild Id if you can share us your experiences....our baby had kasai @ 7 weeks age it's been 8 weeks after [e-mail]

[VijendraSri in reply to vint]

Loadsa love thank you for the info

[vint]

Hi

Her Kasai was at 6 weeks and yes she still has her native liver.

[Heyladydee in reply to vint]

Oh that’s great to hear! I hope my little guy will get to keep his since he had th kasai at 10wks

[vint]

Sending you Hope and hugs.

How is he doing after his Kasai? Which country are you in? Do they have good specialist teams for BA?

[Heyladydee in reply to vint]

Thank you! Hope and hugs are definitely appreciated! ❤️ also we are in the US. The teams here seem to be pretty good. We were lucky enough to be part of Loma Linda University so the doctors are also professors. The surgeon who performed the kasai on my little one stated she performs 3-4 procedures a yr! That’s quite a bit for this rare disease!

[Heyladydee in reply to vint]

Oh! And so far baby boy is alright. He got some color back but it’s not fast enough! Lol every day i tell him to get better fast so we can get going on being great! We have our first GI visit next Wednesday post-op so hoping we get positive news from their standpoint. Then in May we have the first post-op visit with surgery team. Fingers crossed there too!