Formula suggestions for a 4 week old Biliary Atresia newborn

[Mbradle2]

I am very new to this and needing help and support in any way that I can. My daughter was born on 11/25/2019 and while pregnant with her the doctors found a block within her stomach and liver area, but wouldn't know what to do until she was born. After she was born a doctor from Texas Children Hospital who works in the GI field stayed in close contact with us due to my daughter possibly having Biliary Atresia.

On Thursday 12/19/2019 my daughter was admitted into Texas Children's to have surgery on her stomach area because they thought it was just a cyst. On Friday 12/20/2019 she had surgery for her "cyst', but come to find out my daughter was diagnosed with Biliary Atresia. My daughter could not eat for 4 days, but when she could the doctors requested this formula called Progestamil. The first day she took 2 ounces pretty well, but afterwards and until today it started coming out her nose and just not digesting well with her. I asked for a different recommendation of formula, but the doctors are very adamant about this formula, that she has to get use to it. and that she will do well like the other children who have taken this formula. I know it has only been a week post surgery, but I am not feeling well about this. I don't know if it is just the milk or if her digestion is off. If she is not close to me I am unable to hear her gag on the milk in her sleep because it is coming out her nose.

Any other parents have gone through this? What did you do and what are your recommendations? Please help!

[Kimba3]

Hi, I think the formulas might be different here in the UK, but following his kasai my son had Aptimil Pepti Junior formula. It takes disgusting, but he did eventually get used to it.

To help him get used to it, we mixed it with a ‘normal’ formula to disguise the taste and then over a few days gradually reduced the ‘normal’ and increased the Pepti Junior until all that he was getting was Pepti junior.

Hope this helps. Good luck with your little warrior.

X

[Mbradle2 in reply to Kimba3]

Wow I didn’t know you could do that because I’m so afraid of messing with my daughters liver and her numbers increase. But that is a good idea. Did it take a while for your child to gain weight? Now that my daughter is getting a bit use to the formula she is not eating enough to gain the proper weight for a newborn. The dietician wants her to eat 3 ounces every 3 hours, but she is only eating 1.5-2 ounces per feeding with an occasional 3 ounces here and there.

[Kimba3 in reply to Mbradle2]

The milk should help your little one gain weight but best to keep close contact with the dietitian. Babies with BA can’t break down the nutrients they need from normal formula but the one prescribed will help. Our son was on the prescribed formula for his first year and steadily gained weight thankfully. The dietician gave us one week to get him on full prescribed formula or they were would fit him with an NG tube to help with gain. There are things they can do but persevere with the formula. Xx

[Mbradle2 in reply to Kimba3]

Yes, we are on the prescribed formula, in US called Pregestimil, and is gaining weight little by little but not a lot. So we will probably go the NG tube way so she can gain the proper amount and it takes my daughter longer to feed with just getting 2.5 ounces. So what the dietician and doctors said and recommend they will give my daughter the remaining formula through the tube of whatever she doesn’t finish with her 3 ounce feeding orally. Once she gets use to getting 3 ounces then they will take the tube out. I didn’t want to go that route, but for now it seems best so she can get the proper nutrients she needs to get stronger and grow healthier.

[Kimba3 in reply to Mbradle2]

Yes as long she’s getting what she needs, then I’m sure the NG tube won’t be in for long.

Best of luck to you xx

[Pearon]

Hi, our baby also rejected that kind of formulas. (She is 50 days post kasai)

We tried Pepti Junior first. She was vomiting everything 5 minutes after she takes.

Then we tried to give her Heparon Junior. She react the same.

So many vomiting from nose and mouth....

And her eyes were turning to red as well and scaring so much during vomiting. So we stopped giving that kind of special formulas. And continue with regular formulas.

Thanks god, she gained some weight with normal formula as well. And GI informed us that giving special formula is not a priority unless her weight is so down.

I hope your baby gains good weight and doesn't need to stay on NG tube for long. Prayers for her.

[Lois-Cldf Partner]

Hi Lois here. I would not suggest making any changes to feeds until consulting with your medical team. If you are unhappy with their decision you can ask for a second opinion. You can also request a nutritionist to be present in the conversations. good luck x

[Aas1987]

Hi please speak your team again if your not happy with what’s going on. Also reach out to the nutritionist, they are great with giving advice and making you understand things better. My son had Kasai when he was a month old. Progestamil didn’t suit him so he’s on Similac Alimentum. That worked great for him touch wood. But if she keeps throwing up n loses weight they might start her on a NG tube don’t resist that(I know I did ) it’s for the babies good only. They need to be fed and gain weight to heal from the massive surgery they had.