My daughter is 6 weeks post kasai, due to biliary atresia, would like to hear positive things as there is so much negative xxxx

My 2nd daughter had the kasai at 6 weeks old in Leeds due to biliary atresia. We were in Leeds on Monday for first check up since the op and she seems to b doing well her bilirubin is now 11....... Even tho I got good news I am so struggling with the fact no-one can ever tell me she will b ok and she is better...... I would love to hear positive things from people who r in my situation as it's such a massive thing to get my head round and sometimes I struggle.

11 Replies

  • Hello. It is a very difficult time but try not to think too far into the future as none of us with liver babies know what's around the corner. It sounds as though you have very good news about the bilirubin- my boy's took 7 months to become normal! Unfortunately nobody will be able to tell you your baby is "cured" because liver disease is managed rather than getting better but that doesn't mean your daughter won't have a happy and fulfilled babyhood, childhood and adulthood! If you do Facebook you could join Liver Mums group where there is loads of support and many, many parents of children with liver disease all sharing experiences whether difficult or joyful! Have you spoken to CLDF team as all? They're fab! Mainly don't forget to enjoy your little baby, and stay in touch!

  • Hi there am kirstey and have lilly aged 6. She had a Kasai at 6 weeks and then a liver transplant at 18 months. This is a scary time in uncharted waters for your family and u may feel like screaming from the nearest mountain tops at times but it does get better. Come over onto Facebook and search for liver mums group. On here there are some mums who Kasai only and teenagers. We are a friendly bunch and help each other through good and bad days and we meet up when we can. This is a huge shock for you all and it is a roller coaster but it does get easier. Honest....

  • Not all is bad news. Apart from the common long term complications, such as portal hypertension, my 5yo son plays football 3 times a week, golf, tennis, wrestles with me and his sister and leads a normal life. We have been lucky so far, so you could be also. Hang in there and good luck.

  • Her bilirubin being 11 already is really encouraging. Elijah, my son is 3 1/2, he had his Kasai at 4 weeks and 4 days at BCH. I think it took him until he was 15 weeks for his bilurubin to become normal. He was failure to thrive until I weaned him at 17 weeks. He is now at nursery and doing wonderfully; a tall and chunky little boy who looks healthy and vibrant and has boundless energy! He has portal hypertention, which, I must admit was a sucker-punch when he was diagnosed with it last year- but these kids are so resiliant.

    I know a few other Leeds mums and their BA babies (well, they are actually at school now!) are also doing well, so take comfort in that too

    I know it is really hard at the moment, I know it feels like life will never be anything close to normal. But it will be. And it will be wonderful.

    Enjoy her xxxxx

  • Hi, my 2nd son had a Kasai in BCH at 1 month. It was a horrible time, but he's now 4, at school, swimming, riding a bike and doing all the normal things you'd expect of a little boy. (including wrestling with his older brother & younger sister!) He's the most accident prone child I've ever met, which used to worry me sick, but our consultant said at his last clinic that the new thinking is to let them enjoy themselves, rather than wrapping them in cotton wool. There can be nasties along the way, which will get you down, but my best advice will be to enjoy every moment, and be grateful that it can be treated xxx

    PS I'm going to search for Liver Mums on Facebook too!

  • Hi, I understand what you are going through. In these early days you will feel really shaky, scared and in tears a lot. But it gets easier. Try to enjoy and take each day as it comes and not think too far ahead.When the specialist first told me that I thought she was crazy :-) but I finally learned and it works. My daughter had Kasai at BCH in 1997, she is now 16, doing very well Kasai-only. You will have good days and bad, get a support network of close friends for the days you need help on the home front as well as linking with other parents on facebook who know what you are going through. Best of luck!

  • Hi

    My daughter had a kasai at 7days old. She is now 23 and a true inspiration. She also has cerebral palsey and has had many tough times, especially her infant years. I agree that liver conditions are managed, not cured. There is so much more support and awareness these days. We are all guilty of being ignorant to all the different childhood diseases, until they affect us. My biggest advice, one day at a time. Don't compare your child to others, enjoy them for their uniqueness.

  • Hi, My name is Eleanor and I am going to be 32 next month. I was born with biliary atresia and had a kasai at 6 weeks and a transplant at 17 years old. I have been completely healthy since my transplant and also had many happy and healthy years during my childhood. Having a liver disease was never a problem for me and I used to find all the journeys to Kings for appointments to be a great adventure. The doctors became close family friends and I am still in touch with some of them today. No one who meets me today has any idea I have a liver condition but it does liven up many boring conversations when you just drop it in! I have a completely 'normal' (whatever that is!) life. I am married and loving life. I hope this has been some encouragement to you. All the best.

  • My son is nearly 18 and had BA. He has not had a transplant yet. He does have Portal Hypertension and Varies but he leads a normal life. It was scary at the beginning but you learn to relax and not think of liver disease every day. We take each day as it comes. X

  • This is the beginning of a long journey, take a day at a time. Cherish each moment withyour precious baby. It is very hard being a mom and not being given definite answers... Take a day at a time . My daughter had a Kasai aged 10 weeks, we were told .... If she survived the Kasai we would have no way of knowing how long it would work for. We were devastated our beautiful baby , why us, why her... She is now22years of age and lives life to the full :)

  • I have just stumbled upon this post I wrote a yr ago now and it was lovely to read all the lovely messages people sent.... I am so much better now then I was then and am pleased to report Imogen is doing fab and since the kasai we have not had any hiccups yet and Imogen is a totally normal happy 14 month old.... ( very very lucky so far I know ) xxx just wanted to say thanks for all your kind words back then they really helped and still do xxxxx

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