Hi Shannon,

I should say first of all that or third baby, Rose, was born with biliary atresia in April 2003.

I've been doing some research for a bit of writing about it, and last night typed "biliary atresia" into a google search. One of your discussion posts about Jessalyn came up in the search results. So I have found your story entirely by accident.

I then spent ages reading all of your posts, and they took me back with vivid detail to where our family was 2 years ago. I found your writing extremely moving and clear. When I read about the cut right across Jessalyn's belly, I remember how we felt when the nurse in recovery pulled back the sheet to show us Rose's belly after her "Kasai procedure" (the op Jessalyn will have just had).

The path you travelled on to arrive at Jessalyn's diagnosis was much more convoluted than the one we travelled on, and you had the added stress of the initial, separate problems that were discovered. I could relate though to the way the biliary atresia information seemed to be dawning on you, with each subsequent post you wrote.

Anyhow, we have a very long story, but I just wanted to tell you that Rose is now a completely healthy 2 year old, with normal liver function. She received a liver transplant at 12 months of age, and had a mighty rocky time of it. I'm only mentioning that rocly time because of the fact that you would just never know it now to see her. I want to give you hope in the stress and exhaustion of your current hospital circumstances. These babies have incredible resilience!

Do let me know if you need any info at all. At the same time, I have no desire to bombard you with information. Just to let you know that we have got to know very well the Royal Children's and all its quirks, and also the entire gastro team. Also, I don't know whether anyone from the gastroenterology team has got around to letting you know yet that there is a specific support group, based at the hospital, for parents of kids with biliary atresia. I wouldn't be surprised if they haven't yet mentioned it though, because I know that this early surgical time is pretty busy, with the focus being on getting that section of intestine hooked up to the liver! There'll be plenty of time for all the information in the world, once Jessalyn recovers from her surgery and the dust settles - and it sounds like she's doing all the right things. You'll have her home in a flash! (Are you on 4 Main? Or on another ward?)

I've told my other half, Shane, today about my having discovered your story, and we're both thinking of you. If you ever have any questions about how to navigate this biliary atresia experience, let us know! (I'm sure you're discovering your own ways already. We all do it differently too.)

Kindest regards,

Lynne

(mother of Rose, 2, Hannah, 7, and Lewis, 12. Pregnant with 4th baby, due October)