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[Carol1663]

Hi. My daughter was diagnosed with Biliary Atresia and had a partially successful Kasai proceedure.  She had a liver transplant at age 7. She is now almost 31 and has a baby boy aged 4 months.

[YBiliaryAtrecia]

Hi Carol, 

Your message will give hope to many parents like me. Thank you for sharing your experience. Congratulations to your daughter on her new baby.

My baby girl is only 8 months and 7 months post kasai. She is still jaundiced and her poop is pale. But feeding well and gaining weight and very active.

For the first time her GGT came down from 1200 to 450. But billi remained more or less the same. I am hopeful she will clear her jaundice without having to go through a transplant. 

What do you mean by partially successful kasai?

When did she have her kasai and was post kasai time very difficult?

Appreciate your time.

Thanks, omer

[Carol1663 in reply to YBiliaryAtrecia]

Emma's Kasai at 13 weeks helped to drain bile, improve her jaundice and make her so much better. After the operation was quite difficult as we had to learn her medication and get used to bottle feeding. It was hard not to want to wrap her in cotton wool and protect her.  Over time we realised that there had still been damage caused to her liver and that a transplant would be inevitable. She was an active toddler and enjoyed school, although there were some physical restrictions as she tired easily and had to be careful of her tummy. It sounds as though your daughter was diagnosed and treated very early, which is great. I hope all continues well for her and your family.

[Hidden]

Hi that's amazing!! My daughter Tiffany was born with BA. Kauai at 7 weeks and at 7 months after hell with portal hypertension bleeds infections and pretty every other complication going!!! She received part of her 20 year old cousins liver.( 17 Nov 2015) they are both recovering well Tiff' is amazing  thanks for this message of hope x

[Carol1663 in reply to Hidden]

It sounds like you have had a real struggle. I still find it amazing that such tiny babies can go through so much and still continue to fight. Her cousin gave an amazing gift and I hope the recovery continues. When Emma was transplanted she recovered really quickly. She had never really been well her whole life and I was as much her carer as her mum. Within weeks I was almost redundant and it was wonderful to be just mum again. Best wishes to you and your family.

[Hidden]

It is really good to see post which gives families a positive outlook.

Would it be OK to copy this to our face book page to share with our families.

regards Jacquie

[Carol1663 in reply to Hidden]

Of course.  My family are CLDF supporters and you have my daughters pregnancy blog on your site. Always happy to help other families going through the things we did. 

[Hidden]

Thanks carol I will share it

[Hidden]

Hey carol that is amazing! my little girl Tiffany has just celebrated her 1st transplant anniversary... it is such a joy to see people further on in there journey living a normal life. I take so much hope from this! thank you

[Carol1663 in reply to Hidden]

You are welcome. Our grandson was 1 last week and his mummy is thriving. We now know that the care she received as a child, a transplanted youngster and teenager and a young adult has continued into adulthood . The care and attention has been extraordinary. The knowledge that Emma's doner gave her life not only to her but to her son as well is truly humbling.

Congratulations on Tiff's anniversary. Stay positive 😀

[YBiliaryAtrecia]

Hi Carol, great to hear your experience. My baby girl had her transplant last month almost 15months post Kasai. she had a quick recovery, but last week hit by a tummy bug and still recovering in hospital.

Are there any advice as parents we need to be aware of especially in the early days post transplant. How to avoid/control rejection? etc.

When your daughter went back to school, how did she cope in terms of infections such as flu and cold etc? some of the worrying infections are cmv,

ebv,

ptld.....

[Carol1663 in reply to YBiliaryAtrecia]

We did not wrap her in cotton wool, she went to nursery and school like everyone else. We were just very aware that any spike in temperature usually meant infection so I took her temp. night and morning when she had her medication. Her school were very proactive in notifying us of any bugs going around but she still fought most things on her own, just taking a little longer to recover than most other kids.

[YBiliaryAtrecia in reply to Carol1663]

thanks for sharing.

[YBiliaryAtrecia]

thanks, Omer