Biliary atresia

[Jmom17]

My son has biliary atresia. Had the Kasai procedure at 6 weeks old. He’s now 9 weeks old and his bilirubin level is still elevated. It’s higher than it was before the surgery. He completed 2 different antibiotic but it keeps going up. We thought he was going to be one of those that’d be successful since he was so young. Doctors told us to wait to complete his last antibiotic. Today was the last day n the level are high again. Does this mean the surgery was not successful? Anyone else kid bilirubin level took long to go down? I’m scared to death. We have been in the hospital for 2.5 months/since he was born.

[Euntaeng]

How high was the number? My son had kasai when he was almost 3 month which tends to be late compared to other babies and his level started going down after about 1.5month. It was consistently high with all the liver enzymes and suddenly dropped after 1.5month.

We are repeating BT next wk and hopefully numbers are better than last time.

I think it all depends on the babies and you have to wait at least 3month to determine whether the surgery was successful or not.

I wish the best and let me know if you have any question.

I know it is such a hard and devastating time for you and your family but trust your baby. He/she is stronger than you think and do not lose any hope!!

[Jmom17 in reply to Euntaeng]

Thank you for your response. It gives me hope. His level was between 3-6 before and it’s now between 6-8point something. Last direct bilirubin level was 7.8 and the total was 8.2. They already used two different antibiotics(zosyn And meropenem) and it’s still high. I’m so scared. I started questioning if the Kasai was necessary because the level was lower then, but the doctors said it was going to go up if the Kasai procedure wasn’t done...we will be talking to liver specialist today because the GI doctors aren’t quite sure what to do....can they discharge a baby with bilirubin level in 8s? The GI doctor said he could be discharge and have lab drawn every week.

[Euntaeng in reply to Jmom17]

My son’s level was similar. Im not sure whether they will discharge him or not. Where are you abd which hospital?

I think it all depends on his other conditions. How’s his stool color? I think it is a good indicator of a successful surgery.

Without kasai, his liver could have declined all of sudden so yes, he needed to get it but still, successful rate is low for these BA babies which i think it reAlly sucks...

they said the 1st year is the hardest.. so hang in there!!!!!

Ps, i was so overwhelmed with all the medicAtions he had to take even though i work in a medical field.. but you will get used to it and once you get used to it, it is not so bad.

[Jmom17 in reply to Euntaeng]

Thanks!

We are at Children’s hospital in Minneapolis. His level went up again. The scary part is that the doctors aren’t sure/they don’t know what to do/next step. They are thinking about transferring him...we are praying and waiting right now.....His poop is yellow. It’s kinda going back to that clay like color. And his eyes are very yellow...my concern.

[Euntaeng in reply to Jmom17]

Uhhhh i wish you the best!! Let me know if there is anything u need. You can text or cAll me at 7147435953.

[Jmom17 in reply to Euntaeng]

Thank you

[Hidden]

Hi, I don't know if you have received any information from Children's Liver Disease Foundation or met anyone on the and, if not let me know and I can send you some information out to you.

You can email me on [e-mail] or contact me on 0121 212 6023

Best wishes - Jacquie

[Jmom17 in reply to Hidden]

Thanks jacquie. I just emailed you

[Leef]

Hi jmom17! My son has biliary atresia and had his Kasai procedure at 70 days old. Before surgery bilirubin was 7.7. Immediately after surgery it went up to 8.8, then 9.7. The 1st couple of weeks after surgery his Bili levels continued to rise at week 3 post surgery his Bili levels went up to 10. At this time they referred us to a transplant center. It was not until about 6 weeks post surgery did his levels start to go down. We are now 3 months post surgery and his conjugated bilirubin is 1.8. The transplant team that we were referred to told us that if Bili levels drop to < 2 by 3 months post kassai then the chances of needing a liver transplant go down so we are praying! I say all that to say to please give your baby more time before you worry that the the surgery did not work. I know it's hard trust me I was in your shoes not too long ago and still am! Just because his levels are down does not mean that things cannot change..And if the procedure did not work God forbid, there has been a lot of success with liver transplants and I have learned that livers can last up to 30 to 40 years as opposed to other organs like the heart or the lungs. Please keep positive thoughts keep praying and I will do the same I hope everything works out for you let me know if you have any questions! God bless!

[Jmom17 in reply to Leef]

Leef! You are an angel. Thank you for your words of encouragement. I know every Kids are different, but I still say thanks! Your words give me hope. They will be discharging us soon to see a liver specialist at the transplant center as an outpatient because his bilirubin level is still high and his eyes are yellow (was your son eyes yellow with the elevated bilirubin?).

Finally! My baby can come home. I know he’s still not totally healthy but he has been in the hospital since he was born (2 months now) so we are just happy to have him home. We are praying for a miracle.

I’m happy to hear that your son is doing okay. Is he on any antibiotic? They started my son on zosyn after surgery but it didn’t work so they started him on a stronger antibiotic, meropenem and he’s now on bactrium.

[Leef]

Thank you for your kind words! Yes his eyes are still a little greenish in the corners. I hear that is the last thing to go though. It is going to feel sooo good to have your baby home! No he was never on any antibiotics except for right after surgery. Please keep me posted on how your little one does! Y'all are in my prayers!

[Euntaeng]

My baby has been on bactrim since after kasai and still taking it (for about 3month). I think it is just to prevent any case of cholangitis. The yellowness of eye takes the longest to get cleared up.

For some babies, the progress after surgery is slower so dont lose any hope! And I see many babies actually have a better life after transplant as well.

It is overwhelming and hard to wait but babies are good fighter. Make sure he gains weight also!!

[Amyp79]

Hello, my daughter had kasai at 6 weeks of age and her levels didn't go down until she was 8 months old. It can take some time.

[M45984371]

I would echo what others have said. The levels can remain high for quite a while. Our daughter was 14 weeks when she had the kasai, and it took 6 weeks for the levels to go down, all the while the transplant team taking measurements and waiting for donors. It is very stressful. Our daughter is now 11 and half years old and can run a mile in 10 minutes, not something I ever imagined. Keep going, and ask questions of all the medical team. Best of luck

[Jmom17]

Thank you ladies! We finally came home Saturday after 2.5 long months in the hospital (he was born with cat eye syndrome so he has other things going on). They put him on bactrium and actigall for now. They want us to see the liver specialist as an out patient. Besides the elevated bilirubin, he’s stable to be home. We are praying for the levels to go down. Its been 1 month 8 days since the Kasai procedure.

[Pencek]

I am sorry to hear about what you & your lil baby are going through... we are all in the same boat.. just at different stages.

If you do have to be transferred, pls try and get to CHOP Philadelphia, they have a Biliary Atresia Care program no other hospital has. Or try and get a second opinion from the doctors there. It maybe they have a different course of treatment to help the liver along. I have also thought of contacting them once we are out of the hospital, it has been a full 31 days since her Kasai and we are still not home. My daughter is also on bactrium & actigall, it is supposed to help. Antibiotic is just preventive doesn’t help the bilirubin levels but Actigall does. Bili does go up after the surgery but after a few weeks if the trend is downward with lil ups & downs then that’s good. Also nutritional weight is a good marker, has your baby’s weight gone up a lil but since after the surgery? Am sure they will check his INR, albumin etc now if they are referring you to a liver specialist or maybe he will do an assesment.

I wish your lil one & you all the best. Stay strong & hang in there. Our babies are stronger than we think and we have to be strong for them. Keep us posted on his progress. XX

[Mothercrunchy in reply to Pencek]

Im way late but new to the game (son is 3 weeks post kasai). I'm learning so much from comments like yours than the drs!

[Pencek in reply to Mothercrunchy]

Hope your lil one is doing well.

[Mothercrunchy in reply to Pencek]

Me too. We don't know anything yet because his 1st labs and appointment is this week

[Pencek in reply to Mothercrunchy]

Hope all goes well... I am also fairly new but not as much as you. My daughter had her Kasai on 16th July and she just turned 4 months old. It’s a long road to recovery... for some filled with lots of challenges. Let’s hope for the best outcome for our kids.

All the best with your appointment.

TC x