Biliary atresia

[Mommy2maddix]

My son Maddix was born on 5/28/17 and was diagnosed with biliary atresia on 8/5/17. He will be headed to surgery on 8/7/17 they will be performing the kasia surgery. Will my baby be able to have a normal life? How can I help my son?

[Hidden]

Hi there, first of all what a beautiful photo. The Children’s Liver Disease Foundation is a national charity based in the UK.

All of our medical information can be downloaded for free from our website (childliverdisease.org/Infor... as well as support, nutritional information and leaflets about your child growing up with a liver condition (childliverdisease.org/Infor.... Please bear in mind that the information provided is written for people who live in the UK and therefore some of the information may not be relevant to you in your country.

We do hope however that some of the information on our website offers you some of the answers that you are looking for during this difficult time.

with best wishes - Jacquie

[vint]

Hi what a gorgeous little one. Congratulations on the birth of your little one! It is so hard in the early days but Stay strong and listen to the medical team and ask loads of questions however silly you think they are. Our daughter is 12years old and leads a normal life has a music scholarship and is top of her class . she was diagnosed at 6weeks at BCH with BA. She has her own liver and takes no medication something I thought would never happen when she was a little one. She had lots of complications when she was young and spent much of her first 3 years in hospital but then has gone from strength to strength.

I will be thinking of you and Maddix. Let us know how it all goes. The best you can do is love and cuddle him, stick to the medical regime and be the best advocate you can be for him. Try even though its hard to have time away from hospital and BA thoughts and do 'normal' activities such as a walk to the park and take loads of photos in and out of hospital so when he's older you can show what a great warrior he was/is.

I wish i had taken a photo of my little ones tummy before the kasai but Remember that kasai scar just shows that he is stronger than the BA that he battles.

Praying for that dark green stool! (It took over a week for us)

Take care

Hope and huge hugs.

XxX

[M45984371]

Hi, a big, big worry. Listen to what the medical team tell you, ask as many questions as you like. Our daughter had a late diagnosis before Kasai, and we were stuck in hospital for 6 weeks after the operation not knowing if she would pull through. Now, at age 10, you wouldn't know how ill she was. Last week I took her for a one mile run which she did in a swift ten minutes. Stay strong and get as much support as you can.

[Bentrij82]

Hi!!! How did the surgery go? How are you managing? Hope everything is ok and your son is stable and on his way to nice recovery.

[Jbuck1002]

Hi there, I was diagnosed with Biliary Atresia at 8 weeks old and I'm sure at that point the same question as to whether I would ever have a normal life were running through my parents minds constantly but I'm 23 now and couldn't be happier.

In terms of my studies, relationships and work life it has never held me back or hindered me from doing what I want to do with my life. I completely understand what you're probably thinking through all this and would be more than happy to speak to you if there's anything you wanted to know but I know from personal experience how valuable it was to me to realise that a child with Biliary Atresia can go on to have a normal and healthy life and hopefully that will give you some confidence in how well your child will cope with this diagnosis.

Josh