Suggestions on how to include my 3 year old now my baby has been diagnosed with biliary atresia please?

Our worlds have just been turned upside down... Thought our son had breast feeding jaundice went for a routine appointment after weeks of been told the above to suddenly been rushed to kings for further tests. A week later & my son had the Kasai proceedure, we had to be in London for 2 weeks & away from my 3 year old daughter. We are all struggling at the mo but she is so emotional & clingy, she is petrified we will leave her again. How do other families cope/ involve siblings? Thanks in advance

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  • I'm sorry, I have no advice- my son had his kasai in June but he's our first. It was hard enough, I can't imagine leaving someone at home. Maybe she could be in charge of taking syringes to sink to be washed/sterilised, giving cuddles to her little brother & mummy to make them feel better, taking photos of scar for journey/memory box, let her draw about it for when son is older & when you feel like it- let someone else look after your son & spoil your very brave daughter!!! It does get better- Fraser's bilirubin was reduced to 28 at his first check up

  • Sent too early, still have bad days but most are good!! Hope the same for your son.

    Big hugs to you & your family

    Alison xxx

  • Hello! We met at King's in the last few weeks- I'm Bertie's mum (living donor/transplant ops). Perhaps your daughter would like to actually help drawing up meds under close supervision (Bertie started doing that when he was about two and a half- obviously you hold their hand while they do it and make it fun but still accurate) and even give them to her little brother with your help. (Mine both drink squash etc using syringes sometimes!) Can she go along to the weighing sessions and get weighed and have a big fuss made of her there too? My two practise blood tests on us with the insides of biros! Mainly talk to her lots about what is happening to the baby but in a positive "this is how we keep him healthy" way. Generally only one of us goes to the hospital if there's been a need to stay in so each child has a parent. None of it's ideal but we all do the best we can, don't we?

  • We've had a similar problem, our son had Kasai in May, at 19 days, and we also have a 2 year old daughter. It was really hard, as we had never really been away from her, at most one night, then we were in hospital with our new baby and a hundred miles from home! She spent a few days with her Gran, then came and stayed with us at the hospital for a few days, as we were lucky enough to get a room at one of the Sick Children's Trust houses. I don't know what we would have down if we hadn't got the room. It made it a bit easier for her to be involved right from the start.

    We got her a Peppa Pig doctor set, so she could help look after her brother, and she also used the syringes to give her dolly medicine.

    She was really jealous at first, as she hadn't even gotten used to sharing us with her new brother, before he was diagnosed, but she has got better.

    It's hard to know what to do for the best, we just tried to treat her as much as we can, and when we got back home we made sure we took her to the park and did things that she wanted to do as much as possible. Her brother had the focus on him for a couple of weeks, then she got more attention, now we just try to balance it as best we can.

    We didn't think it would get any easier, but it does somehow, I think, or at least it seems to, it just takes a bit of time for everyone to settle in to a routine.

  • Hi there

    My little girl Lilly is now 6 and had a kasai at 6 weeks and transplant at 18 months. I can totally empathise with your situation. I also have a son of 9. Back then I was totally in pieces most of the time. My son was at preschool and was always naughty. WHen Lilly went in for her transplant Joseph had begun primary school for four days then Daddy and I disappeared to London for a transplant and he stayed with my mum. I really struggled with him as every time I saw him he had a tantrum and I will be totally honest I really didn't like him very much. On the one hand I had a sick child who I just wanted to scoop up and run away with to a place where everything would be normal and on the other a child who was screaming out for my attention in any which way he could. They were tough times. I spent a lot of time in the school office because Joseph kept kicking children!

    In the end I realised I had to address my feelings for him as our relationship was not good. He was in year 1 and 2 by now and I just blame him for everything. I found a counsellor who was recommended to me and paid privately to see her. The School got on board as well. It made me look and deal with him differently. I also learnt to love him again, something that I felt that I didn't do and then felt guilty over that as well! Especially as I also felt guilty over Lilly's condition for so long - even though I know it was an act of nature and nothing to do with me.

    It has been a hard and long journey but we got through. Lilly is wonderful and well, most people's jaw drops when they hear she has had a transplant as she is so active. JOseph is growing into a nice young man!

    I have read Alice's reply about Bertie and thought what wonderful suggestions she gave. I really didn't think of any of that. The only time i took Joseph to the hospital to involve him he threw himself on the floor screaming in a tantrum! But getting him to help with the meds etc is a fantastic idea and playing with the syringes etc. In hindsight I was just too serious!

    Good luck.

  • Hi,

    Firstly, at first it is hard to imagine life ever being 'normal' ever, ever again. But it does become YOUR normal and it does get easier to breathe a little bit more. Of course it is important to allow your three year old some empowerment through understanding. I think it becomes easier to allow yourselves, as a family, not to be defined by BA and I think that is incredibly important for both of your children.

    What I am trying to say, unsuccessfully, is that you don't necessarily need your daughter to be involved in the day to day business of BA, but in the day to day business of being a big sister: & that's a hard adjustment for any 3 year old. Ofcourse, she needs to understand in basic terms that her little brother has ' a broken tummy'... but that shouldn't define her role. Or yours.

    Give them time & love & don't live in the future. Take it a day at a time and enjoy both of your babies.

    L XXXX

  • Hi, I know where you are coming from and can remember what you are going through like it was yesterday. I too had a daughter who had just had her 3rd birthday when my son had his kasai, to be miles away is very hard, you have just been told this news, you dont have a clue what is going on, and all i wanted was our family unit to be together. Like some of the above posts, our daughter came down to be with us after 11 days and stayed in the house at the hospital. In my experience I think it is hard for them to understand at that age, tell her you love her, her new brother loves her, spoil her (A Little Bit) whatever happens in your BA journey, stick together. My daughter has went on over the years to support her brother, he now finds it very calming and reasuring if she comes along to hospital appointments(when she does not have to miss school) she has done loads of fundraising for CLDF, all because she wants to, they have there moments like all brothers and sisters, but the bond between them is amazing, this has grown over the years, my son is now 9yrs old, my daughter 12yrs old, he has BA Kasai only and PH(Portal hypertension) the future is scary, I wont lie, the sleepless nights, the worry, but I must say i am so proud of my family, my son has swam, played football, he gave that up, and now does street/break dancing, at national level, so you see there is hope, positive stories, and some great people on here who can help, good luck and best wishes to your family XX

  • Thanks everyone, the support is great & reassuring. I am just so worried about every little thing. Ellie is desperate for attention & like others have described she is now starting to play up so am having to be firm. I know things will improve with time & we all have to adjust. Am trying to ensure she gets at least an hour a day with either my husband or me to do an activity such as baking or whatever but will be trying out a few of the above suggestions, particularly the journey box. Blake is doing well, although am constantly looking at him & wondering if he looks more yellow today or less so.

  • Hello, my son had the Kasai when my dauhter was 18 months old and she had to stay with my mum, while we were in hospital with him. She was missing us but looking back now, she was in good hands and she built a very strong relationship with her granny. My son is nearly three now and this is a very good age to distract them when they're upset. We use ideas like parks (at least once every day!) playing dentist, hide&seek, planes. Make sure Ellie (such lovely names your children have!) eats with you, you can have dinner in the park, ending with a favourite desert(yoghurt in the pouches with jokes for example). It's also the age when they like to be silly and they want the parents to join their good moments. You can record them when they're singing or showing a book to the baby, then watch the recording together, this has always been so much fun for us. they want to strenghten their relationship with parents, so they can be confident and happy. But it is a very hard time for all the family, so take it easy. One first and big step is to relax and love your children. They are superb.

  • Much of what has already been said. my two have an amazing bond, Kinvara is just 7 and Owen will be 4 in november, partly i believe because of his liver disease. she loves telling people all about her little brother and how he was bright yellow etc. we were always honest, and age appropriate with her including when she asked the scary questions. we are at leeds but i'm sure kings have play therapists too, and they did sessions with her, showing her medical bits and bobs, putting together a toy medical kit with real medical supplies, it made her the envy of her friends. when we were separated we would always call her at breakfast time and bed time and with the exception of surgical post op nights we always tried to have one of us at home overnight. we were lucky that my father-in-law or my brother came to stay when Owen was in hospital so she had lots of one on one attention too. when we went to clinic appointment i always bought both of them a snack or magazine from the shop and made a massive fuss over the fact that Owen is my favourite son and Kinvara is my favourite girl (easy as it's just the two of them) we also ensured that we made occasions, like her visiting us in hospital for her 4th birthday we got her a balloon and muffins and told all the staff it was her birthday and then when she started school, daddy and granddad both took her and texted me lots of photos so i could call her and tell her how she looked and fuss with them. for long hospital stays we re jigged our evening routine so she ate at the hospital then went home for bed, we only live 45 minutes from LGI so possible for us. honesty was our key and reassuring her how much we loved her and how much her brother loved, photos of her in the hospital rooms, having her favourite snacks, some dvd's, books, toys and a duvet from home at the hospital, planning trips out or days with friends who understood the situation. Sounds random but when i get the chance i buy a stash of small gifts for her, owen is often given gifts by the hospital or from friends, family etc because he was poorley and by always having hello kitty socks, coloured pencils, bubble mix etc upstairs i could always ensure she did not feel she had missed out, sorry i'm rambling, you are amazing, please remember you are not alone and that there is support for you too, our health visitor was amazing (controversial statement i know:) this group CLDF and the Facebook LiveR group have also given us lifelines and wonderful new friends. Your kids are so lucky to have you as their mummy! Much love xxx

  • Oh and if I told her off for something, I found something to tell Owen off for soon ish, didn't bother him as he was a baby and I said sorry for him, but it meant Kinvara saw that both of them were being treated the same for unwanted behaviours xxx

  • Ellie is so much better already. Thank you all for all the advice & suggestions. We are back at kings next week & intend to take her with us so that she

    Will still feel included.

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