New biliary atresia family, looking for support and community

[Mothercrunchy]

On September 7th my 11 week old son has the Hida scan and on September 10th he had the Kasai procedure. Aside from this being the most devastating NIGHTMARE our family has ever been though, this is hurting us financially, and mentally. I'm deeply tramatized and I just want my son to be ok and to be a "normal" family again. Im looking for community/support/whatever from families who have also been through this.

[Lois-Cldf Partner]

HI Mother Crunchy, My name is Lois and I am the children and families officer at the children's Liver Disease Foundation. We are a UK charity but our website has some downloadable information. childliverdisease.org

If you live in the UK there are other elements to our support that you can access.

[JenColeman]

Hi, so very sorry to hear of the tough time your family is currently facing. Although my son had a different type of liver condition to yours there is a group on Facebook called Liver Mums which has parents from all types of liver disease that can offer support. Lots of BA parents on there too. Search for it and let me know if you find it ok x

[vint]

Congratulations on the birth of your son and sorry to hear he has BA. Our daughter has BA and those first few years were extremely traumatic and life changing. She is now 13 and leads a normal life. She has an academic scholarship at her day school and had a music scholarship fund from her previous school . She represents the county in three groups.

I never thought when she was diagnosed that life would be this good. Apart from her Kasai scar there are no external signs of BA. She takes no medication.

This is all new for you and very scary. Try to do some normal activity each day such as a walk in the park etc. You won't feel like doing it but it gets easier with time. I spent my time waiting by the phone for blood results and researching constantly. I became almost obsessed with BA. It's not healthy and everyone suffers around you. If I had my time again I would be very selective as to who I confided in and would deliberately have situations where I didn't tell/ share about BA. Other people's ignorance can come across as cruel. You will find out who your true friends are and will become stronger as a person. You will have to be assertive and strong to support your little ones rights.

I am unsure which country you are in but if you are in the UK there is help available to support you financially.

Bloods: make sure his feet and hands are really warm before taking bloods We put thermal socks over hands and feet a few minutes before going in the room. We have a two goes and out policy and no junior doctors. Those good veins are precious and some inexperienced blood taker stabbing away just damages them forever.

Any questions however small just message me.

Hope and hugs

X

[Jmom17]

Hi, I'm sorry about your son. My baby has biliary Artesia too. His kasai failed and had a transplant 3 months ago. This does mean yours will too because all kids are different. There's a biliary Artesia group on fb. It has helped a lot.........where do you live? I'm in MN. My name is lay Jackson on fb. You can message me if you need someone to talk to...

[Drmirzaali]

Dont worry you are not alone.12 days ago my daughter was diagnosed with biliary atresia .at 7 weeks. She had KASAI procedure aftr 6 days.

8 days have passed