Neonatal Hepatitis

[Ktinsley90]

Hello. My daughter was born 08/01/2017. In the last two weeks we have found out she has liver disease (neonatal Hepatitis) she goes on Tuesday to have a biopsy of her liver. I am a complete mess. I know it’s a fairly easy procedure but I am so nervous. I’m just looking for other parents who have had to deal with liver disease at such a young age.

[Ktleesond]

Hi I am sorry to hear about your daughter's diagnosis. My son was born 1/5/17 and was diagnosed with Biliary Atresia at 6 weeks old. He had an operation at 7 weeks to restore bile flow including a biopsy. I was absolutely devastated and I didn't know how I was going to get through it. He recovered quite quickly from the operation (children are so resilient) and has been relatively well since. Every day gets a little easier but I still get angry and think 'why my baby?' His biopsy showed moderate fibrosis and he will need lifelong care and probably a transplant at some point in his life (hopefully not for a very long time). I just have to keep reminding myself that no one's future is guaranteed and that medicine is progressing all of the time. I would say to take one day at a time.

[Ktinsley90 in reply to Ktleesond]

They have not completely ruled out BA for my daughter, they said during her biopsy they will know for sure if she has BA or not. I’m sorry about your son but I am glad he is doing so well.

[Ktleesond in reply to Ktinsley90]

Thank you. I hope they rule it out and you get some answers soon.

[SethB21 in reply to Ktleesond]

Hello. My son had kasai 5 weeks ago. And his bilirubin is now higher. Just wondering if your daughters levels fluctuated right after kasai or if our sons may not have worked. Thanks and good luck

[M45984371]

Hi, sorry to hear about your daughter. Our daughter was diagnosed with biliary atresia in 2006 at age 14 weeks. (Quite late in medical terms). The subsequent Kasai and hope for recovery over a long 8 weeks at hospital was devastating and very stressful She is now 11 years old and very well and fit. Not every story is as fortunate as ours, however have total faith in the medical team,and take advantage of all counselling and advice they offer. Continue talking to other people in the same position. The support is very important. We had our treatment at Kings College Hospital in London, and I cannot praise them enough. Best wishes for the future.

[Zuhal]

Hi my son was born 08/06/2017 and had biopsy when a month old but it took really short time and he only cried a bit so don't worry it's easy part

With him they ruled out BA and said Neonatal hepatitis and checked for genetic testing finally they said that he most highly has allagille syndrome and to confirm that they took blood from me my husband and my 4 year old daughter hopefully beginning of November we'll know what exactly the problem is but he is growing and happy baby when I remember myself back at that time I felt hopeless helpless so depressed crying all the time thanks to god because I prayed everyday and he heard me so feeling much more better still ups and downs but this is life time thing that we have to use to it at least he would be able live a normal life with a care anyway good luck and please share the results as I will do the same x

[Dina1986]

Hi

My daughter was born 26/02/2017 when she was only 2,5 months old she had very bad blood results and we spent some days at the hospital to find out what is wrong with her, she first had liver biopsy, then operative cholangiogram in couple of weeks in order to exclude BA, then they took another biopsy while performing cholangiogram, she stayed overnight in the hospital and recovered quickly, was smiling and happy just day after, the next day we already been at home. We are still living without exact diagnosis but she most probably has alagile syndrome, we try to stay positive and enjoy every day and every moment. So far so good she is doing ok, happy little thing 💖. We are facing some feeding and growth delay problems but she is crawling and standing up by herself , developing just as other kids , just a bit smaller ...

Its hard from very beginning, hard to accept it happened to your child, but then you just get used to it and take care of your baby and live normal life, a bit different but still not bad...none of us has certain future, negative thinking about your baby's future will just take the most precious moments from you. ❤️

[Hope1222 in reply to Dina1986]

Hi Dina! I read about your baby, how is he? we have the same experience, did the labs go down? jaundice went away? thank you so much

[Ktinsley90]

Thank you everyone for your stories!! She goes tomorrow for more blood work, then Tuesday she has her biopsy. I will keep you all updated.

[Hidden]

Hi, sorry to hear your daughter is undergoing tests. I am Jacquie, the Families Officer at Childrens liver Disease Foundation. If you need any information or support please go to childliverdisease.org/ or if you wish you can contact me direct on 0121 212 6028.

Very best wishes for tomorrow - Jacquie

[Ktinsley90]

Good morning all.

My daughter had her biopsy yesterday and everything went well. Just now anxiously wait for the result.

[Dina1986 in reply to Ktinsley90]

Stay 💪strong, everything is going to be ok .

[Ktinsley90 in reply to Ktinsley90]

Update: my daughter has Biliary atresia, and will be having surgery today. the surgery she is going to have is called a Kasai. Please pray for total healing of my precious baby girl.

[GodwillHeal in reply to Ktinsley90]

how's your baby doing?