Bilary atresia. Start of this nightmare. Advice needed.

[Clarepear]

My daughter has just been diagnosed with biliary atresia. She is 4weeks old and scheduled for surgery on wednesday (5days time). Bar the jaundice and pale poop she is gaining weight and alert etc. Can anyone give me a realistic out look to the next couple of months if everything goes well. Drs say if all goes well be home a week after surgery but reading online this seems unrealistic. Thankyou any advise you have is appreciated and welcomed. Also do you have any questions that I should ask the dr./surgeon as i haven't a clue and can hardly remember my name these last 4days.

[4rie]

My baby had her kasai at 5 weeks old. She's now 5 1/2 months old. Pale stool appear when she's almost 3 weeks old. She's our first baby and it's all really hard to take in.

Every BA baby will go through different journey. We are in NZ and stayed at the hospital for 3 weeks in total (1 week before kasai + 2 weeks after kasai).

There is a grouo in Facebook (US based) with more members. You can join and get answer from more people ther.

[Widemoon]

From my experience, you are in the worst bit of the journey. The shock of the diagnosis and shuttered expectations were by far the worst thing to overcome for me. Realistically, you are very likely going to be home only 5-7 days post kasai, but that's when the long journey starts.

In regards to the next couple of months, cholangitis will have to be kept on the radar - ie any fever she will have to go to hospital and receive IV antibiotics for days; before discharge, nurses and docs will go through everything you need to keep an eye on - Believe me you will be an expert at your daughter's condition within weeks.

Liver disease is lifelong, even post transplant; a lot of options/words will scare you, but let me tell you - the journey will be long and bumpy at times but somehow it will become easier. Your baby will overcome all of this and bounce back with an ease that will surprise you.

In our experience, a normal life started only after our daughter received a transplant at 9 months old; as scary as it sounds (and so it should as it's a massive thing) there are amazing teams out there doing these things every week and the results with BA kids are astonishing. Liver disease/complications/worries will never go away but I promise you all have happy times ahead! Keep strong, you will be fine, mums are the next strongest thing after our babies!

[vint]

Hi Hun

Congratulations on the birth of your daughter. I am sorry to hear she has BA. Tbh the first 3 years, for us, were the worst with cholangitis and hospital stays, but our daughter is now 14 years old, still has her own liver and takes NO medication. She lives a normal life, has an academic scholarship to a top independent school and has just been awarded a national award in music (top 45 young players in the UK).

For you guys, the next few months will feel surreal. Know it's ok to just concentrate on BA for a while, but not forever. Our daughter did not pass dark green stool for a week and then had cholangitis straight away.

If you are in the UK ask for open access to your local paediatric ward so if she has a temp etc you can go straight in without having to go to the Gp or ringing 111. ALWAYS follow your gut feeling and NEVER feel guilty about asking for bloods to be checked (it has saved our daughter numerous times). Ask the team any question, they won't mind. Keep a record of her LFT results so you can see what is happening. ALWAYS ring the liver team for blood results when done as an outpatient otherwise you can wait days for the local team to get back to you and it's wated time if she needs treatment.

The local doctors will probably know less about BA than you, so stand your ground. If it doesn't seem right, always ask and be really firm. Our daughter was recently ill and the Doctor was insisting on giving her Ibruprofen. I knew she shouldn't have it but he was adamant I was wrong! Thank goodness I insisted he ring the liver unit, as I was right, the Ibruprofen could cause portal hypertension.

If I had my time again I would tell myself:

-Take photos pre Kasia of her tummy (it will help when She is a teenager).

-Always ensure her hands and feet are warm and she is well hydrated before bloods are taken.

-When you get home make yourself do something 'normal' each day i.e. Go to the park, to a cafe etc.

- Make some new mum friends that you don't disclose that your daughter has BA, so sometimes you can go out without the person asking about BA.

-that I would find out who my true friends were and that my outlook on life would drastically change, but that's ok!

-That the scar grows with them.

-You will become THAT mother who will always question, fight and stand up for her child, because it's the only way to keep them alive and safe.

-You were right not to wrap her in cotton wool!

-That you always strive to live life with BA not a BA life.

Hope and huge to you and your family.

I am on fbook as Clare Spence (no profile photo but kids playing instruments on page) if you want to message me about anything.

[madfish in reply to vint]

Hi vint, did you tell your daughter about her condition - how did you approach the topic?

[Katswan]

Hi, I just found this site and your post... my daughter also had her Kassai at 4 weeks old. It was a horrible time and still is very hard and emotional ( she is almost 3 months). We came home after 1 week (in aus) as she was recovering well. We are at home in regular contact with liver team and going back to hospital for bloods/ chat with dietician/ and dr visit next week. The hospital stay was overwhelming at times... so much to learn and so many people giving you information etc but was also such a great time as I met amazing nurses/ doctors that made us feel so at ease to ask absolutely anything and as they deal with this in many different cases it helped make it seem less scary. Hopefully your liver team is as amazing as ours I’m sure they will be! Good luck my thoughts will be with you and your daughter. Take all the support you are offered and give yourself a break. Important to look after yourself in such an overwhelming and hard time. Your not alone xx

[Kimba3]

Hi, congratulations on your new baby!

My son also has BA and had his kasai at 4 weeks. He’s now 21 months and doing great.

We got home after 8 days in hospital but it took him a good 3 months to clear the jaundice.

My advise would be to keep an eye on his poo - I made a folder in phone so that we could show the consultant at each appointment - they love a good poo pic!

It can all take time, and it seems that every BA child has their own journey, so although it’s hard it’s very much a wait and see after the op.

Be aware of the signs of cholingitus post op. The liver nurses will keep you right on what to look out for.

The early days are very dark indeed, and although it never goes away, it will get a little easier to deal with.

There’s a fab group on Facebook called Liver Mums. I suggest you join as the wisdom, experience and support of these other mums is second to none.

I hope your little ones op goes well and she thrives afterwards. Sending you strength to get through this. X

[Manojd in reply to Kimba3]

Hi kimba .. my son's potty some time pale and most time yellow.. 34 days passed after kasai .. LFT records fluctuating ... Please tell potty colour fluctuating is happened with you

[Lois-Cldf Partner]

HI Clarebear. My name is Lois and I am the children and families officer at Children's Liver Disease Foundation. CLDF have lots of information for you on our website childliverdisease.org

You can also sign up with us if you live in the UK and you will get info packs and regular updates (all free) .. you can sign up here:

childliverdisease.org/cldf-...

[Emmalbutterfield]

Hi there my little girl was home 6 days after her kasai she is now 4 and living life to the full x