Children's Liver Disease Foundation

Just confirmed that my son has Biliary artesia

Hello, my son is 11wks old today. He was admitted hospital due to prolonged jaundice with low body weight and increased direct bilirubin (5.5). He had HIDA yesterday and today and scheduled for surgery on Next monday in CHOC hospital in Orange. I still feel so surreal and devastated that this is actually happening and feel so lost with everything that is happenig so fast. His GI doc recommended to change his formuLa to pregestimil (i do half breast milk and half formula) and prescribed multiVit, urosidiol, and fat soluble Vit.

I just wanted to share my story and get some supports with the ones who had similar experiences as me to have some positive insights and i was wondering if there is anyone from OC or LA area in California so that I can keep in touch more closely. Thank you for reading my story.

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Morning congratulations on the birth of your son. It is a scary, upsetting time but for us things did get better. Our daughter was very ill for the first three years then suddenly everything changed and she has done really well. She is 13years old with her native liver and no medication.

I breast fed and topped up with the special formula. My advice on that is do both but make sure you use a good wide teat bottle not the narrow ones as babies can get confused and start refusing breast or bottle. It was a long time ago but I think we found NUK the best.

The medication is a lot to get used to but stick with it and follow the instructions on timing etc really closely.

Take loads of photos pre and post kasai . Our daughter was born pre smart phones so we have very few photos of her pre Kasai to show how far she has come. I also wish we had a picture of her tummy pre Kasai as the scar grows with them and she often wonders what her tummy looked like!

My biggest advice is trust your gut feeling. Don't take any nonsense from Drs who think they know your child better than you! Give them two attempts at taking blood then ask for someone more experienced to try. Keep your babies arms and feet warm before going in for blood tests and also make sure he is always well hydrated.

I will be thinking of you on Monday

Sending huge hug and bags full of hope your way

X

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Thank you for your reply. Was your baby on special formula after the surgery? I feel like i will not be able to produce breast milk for a long time and my baby hates the taste for special formula so i had to mix them together :( also, do you remember when you started introduce real food to your baby and were there any precaution with food?

I know it would be better to just think about positive sides and one step at a time but i cannot control myself from negative outcomes... i hate myself for doing it thou.

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I was exactly the same its how we protect ourselves from what might be. Know that you are doing all you can for your little one because if you weren't you wouldn't be posting here or working so hard on breastfeeding. I breastfed for 2years cos it helped with getting through painful procedures for her!!! I expressed throughout her time in hospital. Make sure you drink lots and lots of water. Express milk and freeze it for those days you feel really low. I found it helpful to Feed as much as possible and every time you give a formula express your milk even if its only a few ozs so your body thinks it needs to make that much. I weaned slightly early on the advice of our dietician so each child is different ask your team what they advise. I fed natural foods not jars as that's what I did for my other children. I froze veg puree in ice cube trays after measuring it out so it made it easy to tell the dietician how much she was eating. I think you can buy much more natural stuff now though. I also did baby rice and then chicken etc just like my others. I did go organic at first but now she eats anything and everything!

Re refusal of formula its a Bit gross but I found if I put lots of breast milk on a muslin cloth after I had slept with the cloth then put it round the formula bottle it helped her take the formula because it smelt of me and her usual milk. Also at first it must be you who feeds the bottle whilst having a cuddle otherwise they get confused. Once she was used to it then her dad could feed her the bottle but that was much later on once I had established a routine and she was happy with a formula bottle.

Its really hard on you as a mum but its worth it for the benefit it gives their immune system and the liver doesn't have to work as hard to digest breast milk. The formula has all the extras for their liver disease so try to stick with it and I am here for you if you need encouragement and support. You can always private message me if its getting too much. I've been there and I wouldn't wish it on anyone.

Sending you the biggest hug ever and hoping all goes well for you guys

X

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I just want to weigh in to tell you that even if the kasai does not work try not to despair. Our daughter had a kasai that completely failed. She quickly became sicker and then was given a life saving liver transplant at 7 months old. She is now 4.5 years old and is thriving and other than her daily medicine to prevent rejection (and big scar!) you wouldn't know she is different than any other kid. There have been bumps, and there will be in the future, but just know that care and surgical techniques have come so far, even in the last 10 years. I hope all the best that the surgery is successful!

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What were signs of kasai failing and how long did it take to realize it had failed? My son had his 2 months ago and bilirubin not coming down yet

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What is his level? I heard it sometimes takes couple months to see the result of it.

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Thank u for ur encouragement. It is very good to hear that ur daughter is doing great! Yes! We learn that life is hard through our kid’s sickness yet we also learn how to conquer and be thankful to every little things.

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Dear Euntaeng

Don't feel bad for thinking negatively. It's normal. What helped me not to think too much was play with my son, not read anything at all about it while I had my toughest days and just trying to be there for him and keep him happy.

Also I used to read all the messages on this forum and realized that all of them had a 'happy ending' despite some of them having many complications. Some stories are tougher than other but all of them had a positive outcome.

Be patient and do whatever you f eel you need to do. It's very tru that you need to trust your gut feeling and if you feel something is not ok, push until you're heard and there is an answer that satisfy you.

Also there are some formula milk that are easier for the liver to process, specially in the weeks close to the operation.

All the best with your son and take care of yourself too. If you need anything, I'm here.

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Thank you! My son is in NICU currently but they think he will be able to get discharged tomorrow after couple more blood test results. By just looking at him, i feel relieved and feel like we can be back to our normal life. It was not easy and im afraid that we might not be able to get the result that we want, but i feel like i grew out of this experience and feel little more stronger. Thank you for your encouragement and thoughtful words.

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And yes! He is on formula called pregestimil mixed with breastmilk. But he makes yucky face with that formula :( and it smells and tastes horrible...

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