My 11 week old has just been diagnosed with biliary atresia...how do you get through the early days?

We have two other kids at home, it's half term, I can't take time off work cos of moneyjust signed off benefit, kings college is about 100 miles away, they keep looking at test results and bringing things forward...my gf has gotta do the kasai business with my boy alone as I gotta stay here...and Idk if i can do this..

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  • Hello. This is a really tough time but you'll be surprised how you can step up to it and cope. Mum and baby will have heaps of support from nursing staff and other parents on the ward but is there some other friend who can be with them especially on the day of the Kasai. Baby needs the op without delay so it's not possible for the hospital to delay these things but do ask and ask and ask any local friends or family for help and support for yourself and your other children. Babies are normally in for a week after the Kasai then you'll have a new kind of "normality" but will all be together again. Talk to the team at CLDF too- they're so understanding. Keep in touch and please let us know how you're doing. By the way, my boy had Kasai and is 5 now.

  • Cool I'm gonna contact CLDF soon as, my boy's godmother will be with them, she was there at the birth as I was so I know that is covered, friends here have been raising money for my travel to London but I want them to donate at least some of it to CLDF my boy is home for now until Monday when kings admit him. I'm just so upset with our local midwives/health visitors/gp we told them time and again something was not right, we didnt know what but something..I mean I don't mind kings bringing it forward, it needs to be done asap it just panics me as I think "Is he getting worse?" Our local hosptal have let us down and they know it they opened the kids ward which is only open mon-fri office hours just for the boy to have antibiotics 3x a day, I'm glad to have them home, Ive been there for all of little man's life and he got admitted to kings as I started work and the one time he (and Mum) REALLY need me I'm not there...But hearing aboput your boy is so positive, and the docs here are very surprised how strong he is physically toop, and he's proper thriving, eating, putting on weight...he's a fighter like his mum and dad are I'm so scared though still I want to be with them...but the other kids..the bills...I know I'm not but i feel a bad dad I just want this done..at least I'm accepting it now..

  • And my boy is proper smiling and making happy noises lol the other kids r in bits can cldf help them too?

  • Bless, just love the way babies get on with things! Oh poor kids! Yes, there are family support people who will be able to help. Give them a call on Monday.

  • The reason for bringing things forward will be that the op has to be done before 12 weeks for it to have the best chance of working well. Concentrate on what's happening now and forget about local hosp/HVs etc until you're settled after Kasai. You don't sound like a bad dad at all, you just can only be in one place! How old are the other children?

  • Will do thankyou gonna take my baby to see his 2yr old sister my stepdaughter in the morning she with her proper dad atm not asking for mum or even me which she does now, she's just asking "where's my boy?" which is y he gets called "boy" lol bless her she knows he's ill but she don't get it and its so nice in a way I think the 2yr old is keeping us strong lol thanks again will let u know how his kasai goes on tues :)

  • Baby is 12 weeks weds the other kids r 2, 8, and 13 and the 13yr old got haemachromatosis another liver type problem too liver probs run in my girls' family and god I so wish I could be in 6 places at once lol!

    And oops...hadn't refreshed...didnt get the replies in the right order..that n my head is a little frazzled...information overload...cldf sent so many leaflets which the postman dropped...and the envolope split and he gave them to me with the stuff about legacies, bereavements and liver transplants on top...I nearly killed the poor postie...I'm not behaving well and it's nopt fair on all concerned

  • My one fear, my worst nightmare is happening n I ain't taking it well...Think I need to sleep and man the hell up in the morning after a bit of a teary night with me mum n Aiden and start over tomoz..gotta take him hospital here at 8,2,and 8 to get his iv meds done

  • Sounds like "Boy" and sister of "Boy" will keep you going through this! Hang on in there- don't forget to eat and try and rest when you can, haha some chance!

  • Ha sleep lol I've forgotten what that was like BEFORE he got his diagnosis lol lo,I do miss his sister coming downstairs in the morning and ignoring everything and everyone until she had leant in the moses basket giving it "'ello boy!" and "on my knee...on my knee.."

  • Don't feel bad about tears- they're very important. No need to be hard on yourself- life's tough enough at the moment! When he's in King's your boy will have the absolute best treatment there is in the world. I won't go into it now but I have every reason to be supremely grateful to the teams at King's- that's for another time. I hope you feel strong and copey (think I just made up that word!) tomorrow.

  • Copey lol I like that lol I acc feel better having spoken to someone who's done this sob thanks again :)

  • Hi

    I know how you are feeling right now, your world has been turned upside down and inside out, but it will settle down again, everything will fall back again, just that your 'normal' won't look like most other peoples. The good thing is that the 'normal' that you will find is one that other people have experienced and through here and CLDF you will come to know them and in time meet them to share all of this. From our experience I would say, don't underestimate how much it will help to speak to people who have been there before you.

    Our daughter was one of twins and diagnosed with Biliary Atresia at 9 weeks with a Kasai at that stage. So, I understand how difficult it can to balance the needs of your children. My husband also has had to work when we have been in hospital and we all find that hard. Right now you have to do what you can for your little one, in the weeks and months to come the best thing you, your partner, your family can do is talk.....talk to CLDF, talk to us here, but MOST importantly talk to each other. In the case of the other children, let them ask you questions and answer them as honestly as you can....that is what we did with our daughters twin sister and she has been absolutely amazing!

    My last bit of advice right now is when the Kasai is done and you have all been home a few weeks or even a couple of months, try to go out with your partner for a few hours.....even if it is just for a walk in the park, give the two of you some space and a chance to take a few deep breaths!

    Hope all goes well keep us posted

  • Hiya :) best thing to do is to register him on dla (disability living allowance) and you be his registered carer, that way you can both get to go up to London with your boy. Same circumstances with me and my parents, ever need to talk im here

  • I've seen notices up at King's about claiming for travel expenses- could be worth asking how to go about this. Enjoy your Sunday!

  • If you have a tax credit exemption card or benefit letter just take that with an appointment letter to the travel office at kings and you can claim travel back x

  • Hi there

    Our little girl is 6 now and had her kasai at 6 weeks. It is awful for you all as it all happens so quickly, well it did for us! I think within 10 days she had had a biopsy and kasai and to be honest we were pretty dazed to suddenly be thrust into it all. My husband was there initially but he had to go to work and care was left to me. We also have a little boy who was 3 at the time. Kids are pretty resilient and I remember our little boy being more interested in his lego whilst I was falling apart!!! However, the CLDF are brilliant plus the nurses and doctors at Kings. We have a facebook page that has been set up called livermums, come and join our group where you can have your moan, voice your fears and make sure you are not going mad as we are all going through the same thing!!

  • Think the Mrs gonna ask just saw them off to the kids ward for his 8oclock drip bless em he is so happy and smiley and bloody strong worried tho he seems real sicky he was sicky anyway but Idk if its that prescrition milk (which makes him smell like the carlsberg factory up in northampton lol) and I asked the Mrs to say something to the team here but she flipped and i flipped vback cos kings will want him back today like and as much as I will miss them when they go for however long tomorow and every moment is precious I was ruthless and said "I don't give a s**t babe if that's what he needs..." and it did not go down well...we aint morning folk at the best of times..that...and I am getting a chesty cough and if the boy gets it...panicking...lol

  • Aidens dad. Go on liver mums on Facebook. We all support each other on there. I know you are not a mum but the admin says it's ok. The principle is the same. X

  • Speak to the social worker that is attached to the ward. We had a similar situation when our little boy was diagnosed with BA. The social worker told us that there is a fund you can apply for to help with the extra costs with travel and living whilst in hospital. We received about £200 to help us, which was fantastic!

    Also The Sick Children's Trust helped us with somewhere to stay, with no cost, we were at Leeds and the house was right next to the hospital. I think there may be somewhere in London that they have similar. Maybe worth contacting them, they have rooms that you could stay in with your other kids.

    Also, had a similar thing with work, at first they said I would have to take unpaid leave, but when they heard how serious it was advised me to go on the sick. I self certified for a week, then the doctor signed me off on the sick for two weeks.

    It's a difficult time, but as others have said, you'll get through it, to a new kind of 'normal'.

  • 6 weeks wish my boy had been caught that early he's double that I'd never even heard of the yellow alert campaign or anything...But good to hear about your girl tho!! And I the fb page..I will tell the Mrs about that too facebook is the only bit of the internet she "gets" lol that would be good for her...

  • My boy didn't take to the milk well and ended up with most of it down his front or my back! It's quite grim if you give it a try! There are several sorts so it's worth mentioning at King's and they'll get a dietitian over to talk to your Mrs. Also I would go back whenever King's ask Aiden in. Especially if this storm does hit badly- the last thing you want is to be stuck where you are and unable to get to London because of road/rail problems when your boy needs to have the operation this week.

  • He got to Kings all good last night, I freaked them out as they called and asked how l;ong I'd be and I said "Well, I'm not coming.." major misunderstanding...they went schitz...until I explained mum n baby were en route...lol made me laugh anyhow :)

  • Hi my little boy Max also has BA. He had his kasai at 8 weeks and is now nearly 7 months. Definately contact cldf and join the liver mums group on Facebook as they offer great support. The only advice I can offer is to stay positive, I was there not so long ago and understand at the moment you feel like your world has blown to pieces but it does get easier although the worry etc never goes away. As for your gf being at kings without you try not to worry as all the staff on the ward are amazing and will offer so much support. Please feel free to message me if you would like to know anymore or just a chat, it's nice to have people who know exactly what you are going through to talk to :)

  • Your boy is soooo cute lol (I'm assuming the avatar is him!) have done liver mums too n my Aiden's kasai is in 30 mins I'm feeling tough today and my boy is strong too mum, a nurse and 2 docs had to pin him down for his cannula they r v surprised how strong he is and he is not as yellow, whether that's the new milk or the meds idk but it sounds positive to me thankyou :)

  • Keep yourself busy today else you will go crazy.....your little boy will be just fine. Prof davenport is the best there is. Did you say you on liver mums?

  • I asked to join liver mums but no response as yet...then again i guess I'm a liver dad...lol ;)

  • Lol I'm sure that want be a problem. I'll get on there now and get admin to accept you

  • And ta v much opff to work now so no fb and ph as i work in an electronics factory making GHD straighteners n hairdryers n sensitive military crap lol thanks again :)

  • And I am not looking forward to work..am working with a guy back off paternity leave today with his 1st...gonna beg my supervisor (nrew dad's bro) to do something else...something harder and busier lol

  • Hi. If its any help to know that my little girl was a late diagnosis too and didn't have her Kasai until 12weeks either. She's 2 now and doing brilliantly. We still have good and bad days but generally life is good with the normal chaos a 2yr old brings.

    My hubby stayed at the Salvation Army head quarters with us literally round the corner from Kings. They put him up for the week free of charge.

    Definately join the fb group. It's brilliant for support and advice. And somewhere to generally have a moan/laugh with others who will understand.

    Good luck for Tuesday. Will be thinking of you all.

  • As a couple of other people have recommended I'd also recommend the Liver Mums group. There is also a King's Kids group too for liver kids treated at King's. Re. somewhere to stay, at King's it is Ronald McDonald House which is near Denmark Hill station, Irene, family support, can help your gf find out about that once they're on the ward.

    In some ways it is harder being the one at home. I used to stay with my son most of the time but I would swap over sometimes to be with the other children at home (we lived nearer to King's so it was easy for us to do that) When you're the one at home you have to wait around to hear what's going on, which can be tough. The thing to remember is that your partner isn't keeping you in the dark or deliberately not keeping you up to date, it's just that things move on hospital time, which is usually slower than real time! It can be frustrating.

    I was on maternity leave when my son was diagnosed (he has Alagille Syndrome not BA) and once I was back at work had to take time off for his appts. I can understand that's not so easy in a new job. I'm sure your gf knows that you have to do what works for your whole family. It will be hard for you not to be there but I hope that your boy is home again soon so you can all be together.

    Jo.

  • I was you 3 months ago. Our son at 11 weeks 6 days had the Kasai. Am now starting to get our heads around things. My husband stayed in the macdonald house whilst we were at kings but it was heartbreaking to leave our 3 year old at home. I too am so angry at local docs/ hospital & now embarking on complaints proceedure but wait till things have settled to do that.

    Here if you want to talk, please take advantage of others it has helped us so much. It does get easier but still ridiculously hard some days but that's how things are going to be & you have to be strong for your boy as well as each other. X

  • Thankyou v much hios kasai is in 30 min or so he is in the best hands I guess and today I'm feeling good :-) gonna busy myself as much as poss todaygonna ask my supervisor for extra work lol but want to be back on time for Aiden's bro's n sis 8 yr old bro is not taking it well having nigjhtmares all sorts poor little bugger and kings have already complained so that is sorted will let all know hopw his kasai goes and thankyou

  • Know exactly what your going through my wee boy is 11 months had his kasai at 7 weeks and 5 days.He is doing amazing since his kasi :-). I had to leave my other three children behind which was heartbreaking and then been told you child had BA (something you never heard tell of).i know you probably think how does it get easier? how do i learn to cope? with my child having a liver disease, but it does get easier with the help of CLDF and liver mums group on facebook you you know your not alone going through this.

    I still get really angry when i think about my healthvisitor, community midwife and local hospital. i had my son in hospital 3 times in the one week and kept been sent home, makes me so cross.

    hope everything goes well, stay strong. x

  • Sounds very much like our situation kings have started the complaint ball rolling sounds like a lot of child care professionals miss these things our friends have all chipped in with train fare to Kings as every penny I've earnt needs to go on bills n food n kids :-/ I'm v lucky to have good friends his kasai is in half an hour or so and I got work can't get any more time off paid n cant afford not to work glad Aiden's godmothwer will be with them today and I'm surprising myself with how strong I am feeling now all is good for now :)

  • Been thinking of you all this morning. Hope everything is going well

  • Sending best wishes to you all today

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