It's great to see so many of you have joined the community.
Why not leave a short comment below and introduce yourselves. Give as much or as little information as you like about your circumstances and experiences.
Feel free to ask your own questions if there is anything you would like other people's opinions or advice on. This is your community!
Hi there my name is Eleanor, I live in South London and I am Mum to Evan, 2.5 years who has portal hypertension and oesophigal varices which require frequent treatments (at King's College Hospital, London). Evan also has a serious congenital heart defect which has required major surgery at birth and more surgery to come. I also have a 5 year old daughter, Elise who also has a (different) congenital heart defect. We have done the rounds of London's children's hospitals over the last 5 years.
I am keen to share experiences with others.
Hello Eleanor- I'm Bertie and Bobby's mummy, Alice. We met at the Under 5's Fun Day and I've been wondering how you're all doing. Bertie had a set back with an infection and went very yellow. The jaundice is gradually going but only time will tell if there was much more damage to his liver. He's happy enough, though! Bobby's bouncing as ever!
Do keep in touch!
Alice
Hi Alice oh yes, when was that - May? I seem to remember good weather and lots of chocolate biscuits! Sorry to hear about Bertie's infection. Glad you're through it and he's happy now. It's worrying for you though.
Things were going quite well back in May I think. Evan got some sort of virus in June and he had three courses of anti biotics before he got better, he barely ate for a month, lost weight etc. The current issue remains his diarrhoea. I pushed for a colonoscopy which he had at the end of July, still no results. My conclusion is it's either a) colitis b) as a result of his portal hypertension c) Coeliac d) 'toddler diarrhoea'. Progress in determining which is sloooooow.
Thanks for enquiring after us!
Eleanor x
Our youngest Son was born with Biliary Atresia in 1979. He had a successful Kasai operation and now lives in Australia where he became a dad last week to a healthy baby daughter. Our family went through the whole gambit in the dark and on our own in 1979 and since, a big issue that CLDF has really put right. Please contact me if I can help put minds at rest.
Best Wishes to you all.
Hi, I live in Dorset and am the mother of a boy who was diagnosed with AIH when he was 16 he is now 21 and doing fine. It has taken a good 4 years for my son to accept that his illness is not going to go away but now deals with it and we are all very proud of him.
My daughter was 16 too when diagnosed, getting on well and like your son has accepted it is a lifelong condition and is generally just getting on with it. Last winter was our first winter and we struggled through, does your son notice a difference in his AIH in winter.
Hi, I'm Tricia, a foster carer of a little girl 2.5yrs old, she came to us at 12 days old. She has Hep C contracted through birth Mum. I have the up most admiration for all you parents who have children with far more serious illnesses than our little girl, even though it can be a very serious illness later on in life. We are just waiting to visit Birmingham Children's Hospital in November, we will find out then if & when she is to start her treatment which will last for 48-52 weeks. Even then we won't be sure if it will be a cure. I have been trying to find a support group, a parent anyone really that we could chat to regarding the treatment she'll be having, just someone with personal experience of the treatment & how their child coped. I would like to wish you & your children well.
Hi, I'm Paula and live in Dorset. My 2 year old daughter was diagonsed with A1ATD at 8 weeks old. She is a normal, healthy 2 year old but we constantly live under the shadow of what the future will hold for her.
Hi Paula, my son Ben (3) has just been diognosed a1atd, myself and husband are carriers, waiting to get results on 1 year old son. This can be very hard and is still sinking in, please feel Freetown contact me to chat xx
Hi Paula, my names jade and I live in Kent. Mylittle girl was 2 in June and was diagnosed with alpha 1 when she was 7 weeks old. She is also a normal, healthy 2 year old. 
its really nice to hear of someone else with a little one the same age as mine and same condition. I haven't met anyone else and only spoken to one person. We're the same as you tho it's always there. Do you have any other children?! Xxx
Hi. My 10-month-old has A1ATD too. He's doing well at the moment and it's great to know there are others like him who seem to be doing well too. I absolutely agree that you live in the shadow of what the future might hold though, both for their livers and lungs, and we're relatively new to all this so goodness knows how you get through it. Good to know we're not alone though.
Hi Everyone
I'm Natasha but known as Tash to the people that know me. I'm twenty years old and I'm from Reading I attend Kings College Hospital in London. I was diagnosed with Biliary Atresia at just a week old and I had a successful Kasai operation at three weeks old. Unfortunately I have other health problems too which is all pretty much treated at Kings. I have learning difficulities too. I do my best to live life to full but a lot of the time I do find things hard to deal with. Hope your all well.
Tash xxxx
Hi Tash, it's Pam and Elle. x
Hello to everyone else and how cool is this forum! :0)
Hello Pam and Elle
Hi I'm the mother of a 5 year old girl who has a rare liver disease called PFIC type 1 (anyone heard of it?) she had a liver transplant at the age of 13 months which failed within 12 hours or so and therefore she became seriously ill, her kidneys stopped working, she was put onto the emergency list meaning any suitable liver match would come straight to her, at one point I was told she wouldn't make it coz her organs had started to shut down! Also she was too ill to go through with another transplant. Then at the last minute a liver was found and the doctors decided to go ahead with the transplant as it was the only way to try and save her! Anyway 4 years on, my daughter is fine, she has good days and bad days but that's life!! 18 months ago I found out she has scoliosis and we are waiting for a date for surgery to have metal rods put into her spine! We live near Manchester but she was treated at birmingham childrens hospital which is a fantastic hospital with some great doctors! Basically you just have to take each day as it comes and no two days are the same!!
Hi Ali,
My little girl is 2. She has PFIC (they are not sure which type either 1 or 2) we are waiting for genetic tests to come back. Sorry to hear you little girl had such a rough time in the beginning. So glad she is doing ok now :-). My little girl is doing well at the moment. She has had a liver biopsy and the results for that came back ok at the moment. She suffers with debilitating itching which is horrendous and she has vit e d and k deficiencies but other that that she is doing well. We also live just nr manchester but she is treated at Leeds. Would be great to hear from you as you sound as though you have lots of experience x
Hiya gemob,
The results can take ages to come back, thankfully my little girl did not have itching! But she did have severe rickets with numerous fractures in her body 
that's how we initially found out she had PFIC, I know you will probably be giving her a lot of medicines including the vitamins, are you giving her anything for her itching? I am sure the doctors at Leeds are equally as good as Birmingham and it also helps if you have a good local team of doctors and nurses, we have an open access pass at our hospital meaning if my little girl is not well, I can take her in without any referral which helps a lot, it's a long road ahead but hopefully you will learn to adapt and that one day hopefully your daughter will go to school and do everything like other kids! Always be positive, take care, wish your daughter gets well soon! Xx p.s if you need any info then just ask!
We jave open access to our local hospital too we have now got to the end of our medication route with regards her itching they have now decided billary diversion surgery would be the best way forward for us. Do you mind if i ask what area you live we also live near manchester in tamesude do you know it? Glad to hear your little girl does so well after her op i do love success stories yeas we are on lots of vits d e calcium and shes had k infusions but her levels seem to fluctuate even though she takes meds. Shes a gorgeoys happy little girl though even though the itching must drive her potty. How is your little girl now after tx.... Sounds.like that was a very scary time for you amd your family cant imagine what you must have gone through.
Hiya, thanks for your reply, you probably take your daughter to tameside hospital, which consultant is she under over there? You asked if i knew tameside, well i also actually live in tameside, where in tameside do u live? what a small world!! They are brilliant at tameside hospital, especially the community nurses! I know them all quite well as well as everyone on the childrens unit! Hows your little girl doing? Hope her itching is a bit better?? when is she gonna have her operation? Wish it all goes well for your family. I forgot to ask, is your daughter putting weight on? Does she feed ok or is she on special feed? Anyway take care and speak to you soon! XX
Hi ali i cant believe that. It is a small world. We are under dr armitage but we r in a lot so know all the consultants and nurses well they are fantastic. We live in stalybridge how about you? Dr armitage had said there was one other child in t.ameside witg pfic i cant believe i jave found you. Where do u live and what consultant are yoy under. We dnt kniw when her surgery is yet. We have to wait for our dr to speak to the surgeons. Would you like toadd me on fb my name is gemma o'brien. My pic is my fella and my little girl x
Hiya gemma, ur in stalybridge and i'm in Dukinfield! Considering this is quite a rare disease what a co-incidence! Knowing my luck, we've probably seen each other in morrisons etc without even realising it! Yeah i know Dr Armitage, Adam he is soo nice but i am mainly under Sarah (tatnall), i normally call sarah by her first name coz she is so down to earth and we can talk about absolutely anything!! When you are in and out of hospital so much, you tend to get to know the docs quite well as i am sure you already do!! How are all docs at leeds? Its always good when you have a good team of doctors because it puts your mind at ease! Anyway you cant miss me and my daughter when we are out and about coz i think she must be the only one around here who has an ng tube!! (i think!) so sorry cant add u on facebook at the moment as i have currently deactivated my account! We'll have to meet up somewhere someday!!!!!! Take care xxx
How strsnge we know dr tatnall well to and adam is the same hes been brilliant with us anf fought our corner at every step. Yeah would be lovely to meet u and you little tresure. One day. We have probably crossed paths at tamezide at some point sounds like ur in a lot too. Would u like me to send you my nember then we can txt? Xx
Hi amjm, perhaps you could start a new question to ask for advice on itching? People will then be able to see it when they log in and can comment if they can help.
-Lisa.
Hi I am the mother of Aaron who is 9, he has portal hypertension, varaces, ascites and blocked splenic vein. We only found out this year he portal hypertension then he developed ascites and a ct confirmed his spleen is also involved, meaning he cant have the rex shunt. We are on medical management and aaron struggles with the fact he cant be fixed. We live near Edinburgh and go to the Sick Kids but see Patrick McCeirnan when he is up in Edinburgh. I worry all the time now that someone will hit him in the stomach and his spleen will bleed or a varaces
Hi everyone, my name's Lisa and my eldest son Freddie, who's 6, was diagnosed with A1ATD at 10 weeks old at King's College Hospital. In February of this year he started to get quite poorly so ended up back at King's for a couple of weeks where it was decided it was time for him to go on the transplant list. We then came home for 3 weeks but again he became ill so ended up back at King's, and on the day we should have been discharged a donor liver became available. His transplant and recovery went well and we left hospital 15 days after the op, he then returned to school (much to his disgust!) 5 weeks later. He's doing really well and his energy levels have gone through the roof!
I think this forum is brilliant and back in March I could really have done with something like this as I had so many questions which the medical professionals could answer to a point but I really wanted to chat to other parents about how to cope with the situation. I'm happy to answer any questions anyone has and share my experiences.
CLDF are great aren't they! I recommend the family conference if anyone's thinking of going. It's not just the meeting the professionals and listening to the talks, for me it's meeting other parents who are in exactly the same position as us and thinking "it's not just me".
Hi there
Just wanted to say hello, and that I'm really pleased your son is doing well. My little girl is 2 and also has alpha 1. She has had no transplant tho but is doing really really well. Cxx
Fab news and I am pleased Freddie is doing well. Might go to the conference, bit of a trek for us. :0)
Thank you! We're a couple of hours drive from the conference but I look at it as a day away from the kids! (3 boys, help!)
Hi, I am Eleanor, I am 30 and I was born with Biliary Atresia. I had a Kasai at 6 weeks old and a Liver Transplant at 17 years old. I have had all my treatment at Kings College Hospital. I am now very well and my liver has been perfect since the transplant. Would be really happy to answer anyone's questions
Hi. My son was diagnosed with A1ATD when he was 9 weeks old. He's now nearly 10 months and so far is doing really well, but it has taken it out of us all to get there. It's very hard being thrown into this world of illness and worry so suddenly, especially when nobody can say what his condition might mean for him in the future. But at the moment he's full of energy and so I guess that's what we have to concentrate on and be grateful for. It'd be great to hear of others' experiences with A1ATD.
Hi
Just reading your post and your situation sounds very very familiar. Our son is now 5 months post transplant after being diagnosed with A1ATD at 10 weeks. He's 6 now and doing fantastically well. I'm happy to chat anytime.
So glad to know your son is doing well. I can only begin to imagine what it must have been like to go through your experience. When it first became apparent there was something wrong with our son's liver, the consultants were highly suspicious of biliary atresia, so we then felt weirdly relieved that it turned out to be A1ATD - such a strange response to finding out your child has a life-threatening genetic disease! We'd never heard of A1ATD, let alone knew that our children are at risk from it, so CLDF has been amazing in providing information that is really difficult to get hold of from anyone other than your consultant. It's so good to have this forum to know that even if things turn nasty, there can be happy outcomes, as with your son. I expect I'll have a million and one questions to ask!
Our consultants were the same, we left hospital not knowing if it was BA or A1ATD. We had to wait a few days before they called with a final diagnosis. We then made the mistake of looking it up on line but when you've never heard of a disease before and you don't know who to turn too you have no choice really. Then we found out about CLDF so that's how we became involved with them.
We've had many years of check ups, some of which we've come back from feeling very negative and quite depressed and others that have gone really well and Fred's results have looked really positive. It was only around check up time that I used to get really down to be honest, the rest of the time although it's always there, we tried not to think about it as you can drive yourselves mad! Which hospital are you under? We're under King's who have been brilliant.
You're absolutely right about searching online - we totally freaked ourselves out, despite our consultant warning us that A1ATD can be so, so different for different people. I think that's part of what we find hard when it comes to appointment time. We went into this thinking our son was ok only to get the bombshell of liver disease, and then I've had moments in the last few months when I've been absolutely convinced he's jaundiced again only to find his bilirubin levels are almost nothing! On balance though, I think it's better to have more information, and whilst I wouldn't wish these experiences on anyone, it's so comforting to know there are other parents out there, each at different stages, who get what this is all about. Were things very up and down for your son up until his transplant?
We're under the care of Birmingham Children's Hospital but live near enough to a major teaching hospital to have been able to have all the tests and clinics done there. It made a massive difference during that awful week when my son was being diagnosed - it was over Christmas and so at least our other two children were able to have as normal a time with us all at home as was possible under the circumstances!
Hi, sorry for the delay in replying, I have to fight for time on the computer in this house!!
All in all Fred's been really well over the years and apart from a big tummy you wouldn't really have known there was anything wrong. He did go down hill quite quickly though at the beginning of the year, and despite knowing a transplant was always on the cards at some point during his life it did come as quite a bit of a shock at how quickly he needed one.
Have you become poo obsessed yet? I still can't help checking the colour of his poo even now!
I've just read your other post about getting siblings tested. Fred has 2 younger brothers and we had them tested at birth. Niether have the disease thank goodness but our middle boy carries the gene.
It's great more A1ATD parents are signing on to this blog. Please don't be afraid to ask me anything, I wish I'd had this 6 years ago!
Definitely poo-obsessed here! We spent Christmas, when our son was diagnosed, emailing photos of poo to the hepatologists in Birmingham. Hoping not to be doing the same this year!
Thanks for your thoughts on testing. I've done a longer reply to another answer to my question, but it's useful to know other people have had siblings tested. Our genetic counsellor is so strongly against it while we would prefer to know so we can do the best for our kids now while they're little rather than simply assuming they're ok.
We're going to the conference in October - will be great to meet you there.
Hi, not sure you'll get to read this before the conference tomorrow but yes, it'll be great to meet you too. At previous conferences they've given us a name badge with whatever disease your child has on it so I'm sure we'll find each other!
Hi zedgirl
My names jade and my little girl is 2 years old. She was diagnosed with alpha 1 when she was 7weeks old. She's doing really well now and is a normal healthy little girl. as you say it takes time to get your head round it all especially when like us it was soooooo unexpected. It took us a while to come to turns with and I couldn't imagine for ages her being 2 but here we are and she's doing really well. That's all you can concrete on really. Is your little boy on any vitamins or anything?! We go to kings, where abouts do you go?! Xxx
That is great to know your daughter is doing so well. We're just starting out and our consultant keeps saying that it's very difficult to predict how A1ATD will turn out in any given child when it is picked up so early on. At the moment things are going well and they feel he is likely to be in the good prognostic group, but you're absolutely right that it becomes hard to imagine them being happy and healthy in the future, especially when it was all so unexpected in the first place. He's just on Vit D for now, under the care of Birmingham Children's Hospital. How about your daughter? How long did it take for things to settle down for her?
Thank u. Yes I remember the beginning well, it's very scary because you don't know what the future will hold but we have learnt to take each day as it comes and just enjoy her. I'm really pleased things are going well for you all. Its nice to talk to people in the same boat. They think my little girl is going to be in the good prognostic group too. But you can just never tell. My little princess is under kings. When she was first diagnosed he was put in vitamin k, vitamin e and multi vitamins. Her liver numbers where coming down but when we went 3days before Christmas they had gone back up abit so they put her on a med called urso. We went in July and her liver numbers have come right down and are nearly normal which is fantastic we were so happy. It takes time for the liver numbers to come down but they will. We always said she was special this just makes her more so :-). If you have any questions please ask, I'm no expert but I know it's nice to talk to someone. I don't really no anyone when we were first diagnosed. Xxx
Hi, my name is Vickie and I was born with a combination of biliary atresia/choledochal cyst. I have had 7 surgeries the first at 3 weeks old,4 years old,21,29,41,49,51. I have had cholangitis for most of my life except for 9 years between 4 and 13 and than 4 years between 29 and 33. I had complications of cirrhosis at 21 at the Royal Free Hospital after surgery. Ascities,portal hypertension,gangrene in my scar,pancreatitis. I have had pancreatitis before due to the complex biliary system I have. I had a daughter at age 24, my life was on the line due to the cirrhosis and I was the 23rd woman in the world to survive. My clotting time was 13 mins, normal is 3mins. By the time I had the surgery at 29 when they did a roux en y procedure similar to a kasai there was no sign of cirrhosis. However, I have had complications for the last 15 years of pain 24/7 of varying degrees. severe at least 2 days a week and sometimes going on for 2 months at a time at that severity. I finally have a diagnose of bacterial overgrowth of the roux en y loop. My surgeon is planning to do away with the loop and join the liver directly to the duodenum. I will write a fuller explanation on another page.
hi im nicky and my 9 month old daughter has biliary atresia and has been treated at kings college hospital. she has had 5 operations within 6 months
Hi my name is Laura, I was born with biliary atresia and following a successful kasai operation I have grown up to be a healthy 28 year old. I would be happy to answer any queries you might have about growing up with liver problems and how it has affected me. CLDF has always been a great support to me and my family - which we shall always be grateful for
Hi Laura,
It's so important to hear positive outcomes and it sounds like you are most certainly one of them! My wife and I had our first child, India, in June last year. She was born with billary artresia and had her kasai at 3 weeks. Eventually this failed and my wife was a live donor for India's liver transplant at LGI in April this year. We have had some very rough times along the way and to some degree we're still coming to terms with all the trauma and disappointments of the past 18 months but India is doing very well now and we are very grateful for all the care and support we've had. India is obviously too young yet to talk about her condition but I would be interested to hear what worked - and perhaps didn't work - for you growing up in terms of what your parents or others did to support you?
Hi, my name is Lexi, I have a 2 year old daughter Isobel who (probably) has congenital hepatic fibrosis and polycystic kidneys. She's growing and developing normally but has portal hypertension with an enlarged spleen and oesophageal varices. We go for regular check ups at Kings and Great Ormond Street. As many of you have mentioned, living in limbo, not knowing what the future holds is difficult at times, its great to hear from those of you who've gone through transplants and treatments and are doing well. We've seen so many different consultants who all have differing opinions on what Isobel's future problems are likely to be, we're just trying to take each day as it comes and deal with new problems as and when they arise.
Hi my name is beth mum of reuben he is 6 months old and was diagnosed with Biliary Agenesis at 5 weeks old this is where he has no bile ducts at all.He had an operation at 6 weeks to go a head to have the kasai at Leeds but unfortunately the surgeon found this.He requies a transplant in the near future.He is well at the minute happy chapy just trying to build him up.We also found out at our last clinic appointment he has alagille syndrome.
Hi our 5 month old daughter has recently been diagnosed with a Choledochal Cyst. We've known about the cyst since my 20 week scan but it wasn't until she was about 3 months old following a referral to Leeds that the diagnosis was made.
As its such a rare condition we found the CLDF so supportive providing us with the information we need and can't thank them enough. Were waiting for a date for surgery in the next month or so, which were dreading, but we know there's no alternative and she needs the operation.
We've been told that following surgery the future is promising for her and like many other parents on here were trying to be positive. If there are any other families who have been through this experience it would be great to here from you.
Hello,
My name is Sophie, I was diagnosed with Biliary Atresia at 7 weeks, followed by a Kasai and in 1997 a Transplant at Kings. Since I have contracted De-Novo Auto Immune Hepatitis and Post Transplant Lymphoproliferative Disorder. I am now 24, living and studying toward my BSc Health Studies at Bristol (:
My son too had ptld aged 2yrs & 7 mths. He had his transplant 13yrs ago on 22nd
Hello, is your son relatively well now? I havent heard of/met anyone else who has ptld until you messaged me. Did his treatment and remission take a long time?
Best Wishes
Soph
Hi
I too had not met or spoken to anyone who had heard or had a problem with PTLD. That is until I joined LiverR. It seams that a lot of people on there know about it. I have not yet been able to go into details. I also what to post it on the Liverfaith site but r so scared that no one will believe me.
I don't know about it but the whole thing seams so unreal.
My son is doing very well now. It just took a long, long time to get him there. We have only had only bad scare in 2010. Since 2005.
The problem is, it's quite a scary path to go down.
Jonathan is in remission but can never ever b clear of the PTLD, that is unless they remove the Tac. But that will never happen. The Royal Marsden who deal with the Cancer side of things asked that question a few yrs ago. The Cancer has caused him problems with his brain as well as other things as he was so young.
R u having treatment at the moment? If they catch it quick it can be easier to treat. But Jonathan ended up having between 8-10 different types of treatment. From removal of meds, surgery, chemo & very, very strong chemo & back to surgery.
There is not much left for him if it returns. The only thing I have been told is too much Tac Cancer, Not enough then rejection & there is a high risk of Cancer back.
How long have u had the PTLD side? I also read that u have De-Novo Auto Immune Hepatitis.
I will tell u more if you wish, but Jonathan hadn't read the rule book & so ended up having to have a lot more treatment that anyone else.
I'm hear if u want to talk or ask as many questions as u wish. If I don't know the answer I will say. But just remember Jonathan had 1 of the worse cases.
Bye for now I need to collect him from Sea Cadets. Sharon
My son is 11 years old. He was born with Biliary Atresia, had a Kasai followed by a transplant at 8 months. He's doing really well having never suffered any rejection. Recently started to have 'abnormal bloods' which has meant more frequent blood tests and kings have started to raise his medication. Feeling a little apprehensive and so is Charlie, he's having a test this week, so have fingers crossed. Any advice on how to explain to a child who's a terrible worrier anyway!
Hi everyone, I'm Sandy, mother to Flo aged 16 and Tabby aged 13. Flo has autoimmune liver disease and sclerosing cholangitis. She was diagnosed 5 years ago after tummy pains took us to A&E where they suspected appendicitis. However, urine samples showed raised liver enzymes which resulted in many more appointments followed by the diagnosis of autoimmune liver disease. Later a MRI scan showed beading of the bile ducts and she was diagnosed with sclerosing cholangitis. I am interested in hearing from anyone who has experience or advice about these conditions.
Hi, my name's Chelsea and I am mum to Sadie, 11, who we found out over the summer has Portal Hypertension due to PVT, resulting in a massive spleen and grade 3 varices. It came as a huge shock to us all and was very scary when she threw up massive amounts of blood and then spent 4 days in the local hospital not knowing what was wrong before getting transferred to Kings. Sadie has since had 3 OGDs to control her varices, after the last one we were told that she didn't need another for 12 months, whoop whoop, which is fab as she's not coping with needles at all ....... I just wondered if there was anyone else on here with a similar situation to share. Sending positive thoughts to everyone x
Hi, My name is Wendy, my son was diagnosed last July with Wilsons disease. It has taken us a while to get our heads round this as he has non verbal autism, adhd, o.d.d. learning disabilities and possible bi-polar disorder. it has been a bit of a journey and because of the neutropenia he has been unable to go to school since last june. Hopefully things are getting better.
Hello,
My name is Kirstin and I'm mummy to little Miss Trouble aka Erin. She was born with BA and transplanted at 6 months old. She is now a wild 2.5 year old toddler who keeps us very busy and very happy. We've had a few bumps post transplant but she finally seems to be getting stronger.
Erin has developed lots of food allergies that might be caused by Tac or from having BA, who knows, sometimes these are harder to manage than post transplant issues! I'd be interested in hearing about any other peoples experience with food allergies post transplant.
x
All,
My name is seema Mistry, born in 1990 and had a liver transplant in 1992. I was on the waiting list for 6-12months but now will be celebrating 21years of my liver transplant in march 2013. I have suffered from biliary atresia, hepatitis, jaundice to anxiety, cramps, under weight.. Am a 2:1 graduate in BA Business and Marketing and work full time at HSBC.
Courage, will power, positivity and belief has got me this far in life.. With the life time support and help from children liver disease foundation, Birmingham Children's Hospital and all my friends and family.
Hi Seema,
Many congratulations on reaching 21 years post transplant! What an amazing milestone, I hope you had fun celebrating. It sounds like you have already accomplished so much in spite of all the things you've had to deal with. It is such a worry for us parents that health issues will prevent our kids from reaching their full potential in life, I'm so glad your seem to have used these things to push you on rather than hold you back.
thanks for sharing, you have made my day : )
Kirstin
Hi everyone , I'm Ashley my 6 months old daughter Ava was diagnosed with BA at 6 weeks and had her kasai at 7 weeks we have just found out that we have to go back down to Leeds next week for a per transplant assessment not great news but a sort of relief to me knowing it is happening and not having to wait .
Ashley
Hi all, my name is Jane and our little daughter Emily was first diagnosed at four months old with Alagille's then a few months later with Alpha 1 ATD. Our heads haven't stopped spinning since the double diagnosis but we concentrate on a day at a time and try not to look too far into the future (not always easy!!!).
Emily has just turned three and she is healthy and full of energy which is wonderful when we think back to when she was first admitted into hospital. She has regular checks with Cardiff and she is just about to start the next round of tests before we meet with the Birmingham team.
I still get days where I struggle to get my head around things and living with the unknown can be hard but it would be great to share advice and experience with others and know that we are not alone.
Elevated direct bilirubin and liver enzymes 
Weight gain in BA babies 
Chances of liver disease in subsequent child
Query for liver transplant 
