Just wondered if there was anyone who has a child with Choledochal Malformation. My little girl was poorly and in hospital alot at the beginning of last year with Jaundice, pancreatitis etc which carried on throughout the year. The Drs were baffled by it, we had various theories from chest infections to constipation. It basically it took all year and loads of investigations but we've been to Kings a lot and they did mrcp and ercp to get a diagnosis. The Drs have told us that she kind of has but not quite, has Choledochal Malformation. The appointment was quite late and rushed and we were told to go home and Google it and go back to them with any questions. I just wondered if there are any parents of children with this condition as it seems very rare and all that is on the internet is studies which show all sorts of statistics and serious implications.
Many thanks
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npidgley71360
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A Choledochal cyst can come in a number of types. The type she has will determine what they do next.
As you have stated that "she kind of has but not quite, has Choledochal Malformation" it would be difficult to give more information.
You need to have the doctors explain their statement.
Kings are the specialists when it comes to the liver, the team there are fantastic. You will be well looked after by them.
How old is your daughter?
There are some good sites, main one would be CLDF (childrens liver disease foundation). Join up and you get access to their leaflet that the NHS hand out.
thank you for your response, Chloe is 4 and I think one of the hard things about this is because we never knew or suspected she had anything at all wrong with her until just before her 4th birthday so it feels like it came out of the blue. I think it is a Choledochal Cyst and one of my questions in the letter I have written to the Drs was what is the difference between them if any. The CLDF seem like a great source of information and in a way in which is better understood. I do feel confidence in the fact that we are with Kings especially talking with people who have experienced being in their hands.
Hi, I've not heard of the malformation before but there is a Liver Mums group on facebook, and I know there are a couple of Mums whose daughters have had choledochal cyst's removed, one quite recently at King's.
Brilliant, I have just looked it up and joined the group. I'm really glad I came on this site as speaking with other people and finding out about other groups etc I think will be really helpful.
Choledochal malformations (also known as choledochal cysts) may be characterised as an abnormal dilatation of the biliary tract, in the absence of any acute obstruction. Most appear to be of congenital origin probably related to distal bile duct stenosis, and almost 15% can now be detected antenatally. Excision and biliary reconstruction using a Roux loop as an open operation is still the standard to compare to. This article discusses recent advances in the understanding of their aetiology and classification together with the place of newer modalites of surgical treatment such as laparoscopic excision and biliary reconstruction. Although these are definitely feasible and safe, care should be taken before dispensing with standard open techniques which have minimal complications and proven long-term benefit.
I am not sure how old your child is but my daughter was diagnosed( eventually- like you after a lot of doctors and hospital visits) when she was 7 months old with choledochal cysts and had an operation, Roux loop, when she was 9 months old. She is nearly 14 now and has thrived since she came out of the operation! It was like a miracle. She is very very special to us and for me her diagnosis reminded me how lucky I was to have her. We always say that they swopped standard batteries for Duracell Extra when they operated on her! She was discharged from annual checkups when she was 11 because she has been so well since her procedure and she continues to be well. This will be an anxious time for you all but ask all the questions of the Doctors so you know what you are dealing with and take all the support you can get from family, friends, sites like this and CLDF-they were my rock.
If you want to know any more let me know. I will be thinking of you and your family x
Its so good to hear how well your little girl is and how she has grown. Its so what I have been looking to find when looking on the internet, just some hope that normal life can continue to a certain degree, All you find is statistics and nothing which really tells you how people live and get on with their lives when faced with something like this. Its also great to her that your daughter had lots of energy after surgery as this is something which Chloe lacks alot of the time, she's often really tired and stops playing with friends or wants to be carried instead of walking. Have to go do school pick up now but thanks for sharing this it has given me a more positive view on how we go forward x
No Problem. Just to let you know that my daughter wasn't crawling, couldn't sit up on her own , had no appetite and basically lay in my arms prior to her operation. The morning after her operation I was awoken from beside her cot in the hospital to the sound of cooooing and gurgling and as I opened my eyes I saw her sitting up full of the joys trying to remove the various lines from her which she obviously didnt want in her! She went on to have cereal and toast for breakfast, yoghurts, fruit, lunch, tea ............and she was walking within 4 weeks of her operation? Like I say it was like a miracle. I look forward to you telling me a similar story soon. x
Hi there, my daugher was diagnosed with choledochal cyst shortly after being born. She had it removed at 6 months old having roux en Y surgery. She's nearly 2 now and doing well, having regular scans. They are usually classifed into different types which will usually decide how the doctors treat the condition so its worth speaking to the doctors to find out more if you can. Sounds like you had a difficult time getting a diagnosis but hopefully now the doctors will be able to help your daughter get better. Get in touch with CDLF if you havent already done so as they were are really helpful. Hope all goes well, feel free to get in touch with any questions if you need to.
Hi I'm sorry to hear that it's taken some time to get a diagnosis for your little one. Not sure if this is the same but my daughter had a choledochal cyst, was picked up when I was pregnant, at my 20 week scan, although they did not know what the cyst was until Mya was given an ultra sound at 1 day old and MRI at 8 days old. She then had the operation at Kings at 13 weeks old. That was in May last year and she is doing brilliantly. Mya's liver biopsy showed up some scaring and mutation, we are not sure what that will mean for her now or in the future but at the minute she is a healthy and happy 10 month old. She has six monthly scans and blood test.
We were told that it was not common to find these cysts so early, if not detected ante-natally usually syptoms start when children are around 3 or 4 years old.
We had a list of questions for the consultants after reading the CLDF leaflet on choledochal cyst, which is really helpful. Operation/ treatment will depend on what 'type' of cyst your daughter has. My daughters was Type 1 but there are a few different variations. And google was a minefield!
Sorry if I've gone in a bit and if you want any more info i'd be happy to share.
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