My first little baby has Biliary atresa and I'm so upset and feel so low.Please can I hear anything positive to make me feel a little better

My first little baby boy has biliary atresa. Born on the 11th November 2013. We was only home for a week then was back into hospital at Kings. He had a Kasi at four weeks. I've never heard of this before and I'm not dealing with things well, I'm not sure how to cope. I love him so much and I'm scared to lose him. Can anyone who's been through this message me, I would please like to hear anything positive.

My boy has been to his first appointment where they said his liver function bloods were still the same but jaundice has gone down.

They said that it can take six months for it to go down.

I can't stop thinking of things and finding it hard to deal with everyday things. Sometimes I blame myself and wonder what I've done. I'm twenty eight and this is my first baby and my labour was very traumatic to. 72 hour labour ending in forceps. Xx

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  • Bit rushed to write much now but just wanted you to know my first baby had Kasai at 9 weeks and is now 5, spends all his time running around and jumping in puddles and is doing well at school. It's nothing you've done. By contrast his birth was quick and easy. You'll find it in you to cope with your special baby. Back later. x

  • Thank you for replying to me. It's so good to hear something positive and I'm really glad your baby's doing so well. I just panic about everything, especially when I hear things from other people like the word transplant scares me so much and I just don't think ill be able to cope going through that, it's nearly broke me going through this. Do you have to go for regular check ups/blood tests? How does your baby and you deal with it? Brakes my heart when I have to see my little baby having all these blood tests. I know everyone keeps saying to me it's early days, but does it really get a little easier? Have you any other childeren? Sorry about all the questions. xx

  • The only way I've coped is to enjoy my boy's childhood one day at a time. We knew from when he had his Kasai that eventually he may need a transplant, an absolutely terrifying thought initially, but didn't think that far ahead. It's important to accept now that blood tests etc are going to be part of your baby's life and to think positive, maybe do something fun after the blood tests, even just go out and have coffee and a big piece of cake while giving your baby a massive cuddle. Special babies are given to special people!

    My boy has had a transplant, 5 months ago, and is totally transformed. It was a lot to take in when he was called to be assessed the first time but having come through the other side the difference in him is unbelievable. But don't worry about things like that yet, focus on today, enjoy your baby now. King's know what is best for your child and he is being looked after by a stunning team.

    It was about seven months before Bertie cleared his jaundice and most of his liver function tests were never "normal" but I was told it's not necessarily bad news as they look at the blood tests in conjunction with ultrasounds and the picture of how the child is in themselves.

    After the first few months Bertie used to have blood tests every few months but then it became every few weeks as he became unwell more frequently. After his transplant it was weekly but a few days ago King's emailed to say they didn't need one for 6 weeks!!!!! Yay! He's now really brave with blood tests, as long as we visit the chocolate shop before or after each one!

    It really does get easier as you experience that it's very rare for anything worrying to happen suddenly, healthwise. I was always watching for signs of deterioration in the early days but did start to relax, and didn't want my boy to see me worried, tense or upset so have tended to bottle things up but this is a good place to air them!

    Bertie is 5 and his little brother is 3 and a wonderfully healthy little chap.

    Always feel free to ask away, and do keep in touch.

    If you do Facebook there is also a very helpful group called "Liver Mums".

    Take it easy- enjoy that baby!

  • Hi my daughter was diognosed today.We going to kings on the 4th August for the kasai.How has journey been since you last posted?

  • By the way, what area do you live in? Maybe you could do with talking to a friendly liver parent!

  • I didn't know your baby boy had a transplant, you sound very brave and strong. And you had another after this, I would love to have another i feel guilty for thinking this way but I feel I have missed out on allot of things first time mums experience, I went from being so happy after labour then a week later my world felt like it was crumbling around me. I'm scared of having to see him unwell and in pain. I really can't bare to think about him going through any operation again. Your boy is so brave having blood tests once a week it's allot isn't it. I'm still trying ultra get my head around everything and I'm not sure i ever will.

    I live in Romford Essex, where do you live?

  • Do you have a Facebook? Email me.. There's lots of support groups that have helped me through everything.. *Edited by CLDF 8:26am 14th January 2014

  • Hi hun, my little boy also has biliary atresia. He was diagnosed and had kasai at 7 weeks 5 days. He is now 9 months old and doing good. It's great your little boys bilarubin is going down that's a good thing. Feel free to message me. If you have Facebook search liver mums they are a brilliant group x

  • Hi, I know exactly how you feel, my son has BA and portal hypertension, he was my second child. He had his kasai at 5 1/2 weeks at leeds. Everyday is herd, there are times when you worry more than others, everyday things in the begining seem like a struggle, but you will cope, you have to, just remember he is your son, you love him and most importantly its NOT your fault. Right after that bit i will tell you about my son, this year he will be 10yrs old, he has been admitted to hospital a handfull of times(he has been lucky) he went to toddlers, then to nursery, all fine, he started school, went to swimming lessons, played football for a few years, he now does break/street dancing and is a national champion with his crew with this, now if that is not something to be proud of i dont know what is, yes in the begining it is very scary, i wont lie, it continues that way through out their life, but you will learn to live with it. Try and stay calm, love your son , hug him everyday, ask questions, dosent matter if you think they are silly, if you dont know ask! I hope he continues to do well, and I hope this little bit of info helps.

  • I can remember feeling exactly like you. Not only are you coming to terms with a huge shock but you are post natal. It took me a year to feel ok again. Everyone kept saying you find a 'new normal' but I just wanted my old normal back. I can remember feeling terribly upset, angry, panic, the lot. My little girl has a different liver disease but with hers we were told transplant is inevitable. However, she is doing great. 5 years old next month and still no signs of needing a transplant. I learnt to enjoy her even more than my first 'healthy' child as every positive felt so much more important and miraculous. You will get through this but you need people to talk to and to hear positives. Remember, people tend to post when they have worries. For everyone of those worries, they have lots of wonderful memories and moments, we just don't always share them. I remember the moment where I looked at Eleanor and actually saw her and felt happy rather than seeing liver disease and feeling sad but it took a while and time is a great healer. I hope your little one does well but remember there are lots of people on here and Facebook who will respond if you have questions and your medical team are amazing. Use them if you have worries. Thinking of you at this difficult time, Claire x

  • Hi, sending you a big hug. It is not your fault. You have a special baby because you have an inner strength to love and care for him. Enjoy each day and love him with all of your heart. Take one day at a time. You will feel overwhelmed and very frightened. I was given some valuabe advice.... Its not always easy to talk or voice how you feel so write to yourself. I still have my books which I still find painful to read through. This is going to be your life, blood tests regular check Ups , medicines, scans etc. It becomes a way of life and you will find strength to cope with things, just one day at a time. My motto that gave me strength wad live for today, follow your heart and live life to the full. my daughter wad diagnosed at 9 weeks, she had a Kasai aged 10 weeks. We were told to take a week at a time. I felt ad though the hospital wad my new home and the doctors were my new family.my daughter went to private nursey, school and university. She is now22 and off to Thailand next week for a holiday... Claresmom :)

  • Hi Kelly-Anne my little boy has a different liver disease called alpha-1 antitrypsin deficiency. I know how you feel I was only 18 when he was born and felt so confused and alone of how this happened to me! But no matter what this is your baby and he will need you now more than ever! I hope someone with biliary atresa can you:)

    You will get great support here :)

    Good luck x

  • I certainly felt very similarly when my son was born in October. He had his kasai at five weeks in November and then had cholangitis in December and was back in the hospital again for a week. The past five days or so are the first days where I haven't cried. Life is starting to feel normal as others with kasai babies said it would. My son is putting on weight slowly, after being born at over nine pounds, but is otherwise developing normally. He smiles and coos just like any other three month old. I know how scary and awful this whole thing is. And unbelievably unfair. But you won't lose your baby. Everything is going to be fine. Good luck.

  • Hello, I echo wHat everyone else has said... It us really tough& you will be up & down, angry, sad, feel blessed when your little guy smiles for the first time ect but we are all here for each other. My little guy also has BA he is 8 months & has Kasai at 11 weeks 6 days. He has cleared his jaundice & is doing well so far. Sending you hugs & hear to chat always. Liver mums on Facebook is great. X

  • Hi i really feel for u reading that as i was in same place just under 3 yrs ago. I have a little girl called faye who is so full of life, its easy to forget that theres anything wrong! Her kasai was done at 8 weeks in kings, and although at 1st its an emotional rollercoaster u will soon not necessarily understand but accept. I went round in circles for months and months. But her continued good health and well being made it easier. She is now at nursery 1 morning a week, full of life and causes me all sorts of normal toddler problems! Ive learnt that sometimes its easier to not keep looking back but to look forward and life on a day to day basis. U will too with time dont be rushed into thinking normal has to be now. Wishing u lots of love and sympathy and remember u r not alone...these sites are much better than google!! Take care and big hugs to ur little boy :) xx

  • Hi Katie.

    I'm glad your girl is doing well, how is she having blood tests and going to the appointments at Kings?

    Do you have to go to Kings regularly?

    At the moment we have only been to our first appoinment and waiting to go to the 2nd for more bloods and an ultrasound scan.

    It's all really scary.

    Allot of people have said don't look back look to the future and one day at a time. I'm really trying to think like this and get into the right frame of mind but it's hard. Xx

  • I am so sorry for the troubles you are having and my thoughts are with you. I thought I would reply as I myself had biliary atresia and I am now 30 living a happy healthy life. Yes there have been a few complications along the way and I have had some issues but since I have got older these have got less and less. I know this isn't the same for everyone but I wanted you to know it is possible to live a healthy life. If you would like to talk to me then please let me know. Laura x

  • As everyone has said. Please do not feel "guilty". I know it's tough not to but there is absolutely nothing you did wrong.

    I can also tell you that our daughter is now 8 months, diagnosed at 4 weeks. We had the Kasai and it did not work for her. However, she ended up having a transplant just over a month ago and she is doing so well. I know that transplant brings a whole host of new issues but know that even if it gets to that point there are countless children (now even into adulthood) that have done incredible with transplants. The success and management of medication is improving each and everyday.

    That said, there are also many parents, who have chimed in, where the Kasai has worked very well and the child continues to thrive. Just know that others have been through this as well. That is what comforted us most as we go on this journey!

  • Hi Kelly-Ann, I really feel for you reading this, I went through exactly the same this time last year, my baby boy had BA and had his Kasai on 9 January, he was seven weeks and five days when he had his Kasai. I was so emotional, my world had been turned upside down. People kept telling me take one day at a time, I didn't think this was possible, I kept thinking how can I, take one day at a time this is my baby were talking about!!!! But it does get a lot easier, just after Kasai we were on weekly bloods then fortnightly then monthly and now we are 6months. I feel the same as you the word Transplant scares me so much. I try to forget about transplant and hope we will never need to go that route, Jack is doing amazing since his Kasai and into everything a typical 13month should be. I look at what an amazing brave wee boy I have and this keeps me so positive and I sometimes forget he has a liver disease. I really hope you get over this emotional time it does get easier stay strong big hugs to you and your amazing wee man xxxxx

  • Hi Kelly-anne

    I completely understand how you feel because I was you just 17 months ago and now Sophie is 18 months old and doing fantastically well having had her Kasai at 6 weeks old. Your little one is under an amazing team at King's. They offer so much support and take such wonderful care of Sophie.

    You really aren't to blame. It's just one of those things. Making something as complex as a new human being in just 40 weeks makes you wonder how any of us are born without a little glitch here and there! My son was born by forceps and he doesn't have BA.

    Sophie has two friends who have had liver transplants and they are also thriving.

    Keep strong for your little boy. You are stronger than you realise and the despair soon gives way to joy as you get to know your baby and what a little fighter he inevitably is.

    Much love and best wishes

    Lisa

    x

  • Hi there

    It goes without saying that this is the one place where everyone really does know what you are going through. Our son, who is now 10 was born with BA he has a twin who was (and is) totally healthy. You cope because your baby needs you to and because you will always do anything in your power to make everything the best it can be for him. Take strength from the fact that you are with experts who really do know what they are doing. I hated being told 'look at what can be achieved for these children' and 'you only see the really sick children on the ward ' and I never wanted to talk to anyone who had come through the other side because in the back of my mind I kept thinking 'that's ok for you but how do you know we will be like you?' This was especially true because our little one was exceptionally poorly after inexplicable complications at his first kasai attempt.

    The first 12 months of our family life were manic and are now a blur in our memories. At 9 months old our boy had a transplant and next month we are off for our 10 year MOT at the children's in Birmingham. It is remarkable what could, can and will be done for our children - trust the medics and you will find your path. I found it helpful to write a little diary about everything that I was feeling - what he was doing, our ups and downs all of it really - it was cathartic especially in the very early post natal emotional roller coaster days. I haven't written in it for a good 8 years but it is there for him when the time seems right for him to read and understand better.

    And now I find I am talking like those people I tried so hard to avoid! We have had 10 fabulous years, the heartache of the first 9 months has helped us to truly appreciate what we now have - we have since had another set of twins (like you we felt robbed of the 'normal' that everyone else seemed to get, or as normal as twins can be) and life is bedlam with a capital B. I wouldn't have it any other way! Of the 4 children he is probably the most hale and hearty - take it one day at a time, love every precious moment, and believe it will come good.

    Take Care xxx

  • Hi, so hard to deal with and definitely not your fault. Our daughter had kasai at 5 weeks, she is now a very lively 7 year old, having yearly checks at a kings outreach clinic in Brighton. Felt exactly the same at the start, but things do get better. Lots of hugs and trying to do normal things helped us, ask loads of questions and leave the internet well alone are my top tips! Still have scary days when we worry about the future, but try to live each day as it comes. Enjoy your lovely baby xx

  • Hi my son is nearly 18 and is BA only. He is doing well apart from having Portal Hypertension and Varies too. You will learn to relax and take each day as it comes and enjoy your baby. I live in Basildon Essex so not far from you. If you join Liver Mums on Facebook we can arrange to meet up. It helps to hear the posture story's x

  • Kelly-anne is right, im living with BA, im 21 and have portal hypertension and I still have my native liver, if you keep worrying it will only get worse for you, I dont worry if I live another day good on me but if something happens then I will take each day as it comes. Just hang on in there touch wood he does as well as he can :) chin up x

  • All I can say is that these wonderful little babies who are born to us seem to take on the most courageous, resilient, fun, caring, loving, amazing personalities..... They are very special children.

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