Choledochal Cyst 6 y.o girl. Experiences please !

Hi all !

A post from Greece !!

My daughter (6 y.o) was diagnosed with a choedochal cyst late last year, after a dose of abdominal pain. Blood work at the hospital showed signs of pancreitis, and they performed a scan in the morning , which revealed a cyst like formation on top of the pancreas. They firstly assumed that it was on the panreas, where cysts may form due to some sort of injury (fall, hit to the stomach).

They sent us to see specialists, where an MRI was performed, and they diagnosed, most likely, a pancreatic cyst (likely type 2) The specialists here have chosen to wait a few months, to see if the cyst subsides. Today we went in for a scan (our 4th), and it seems the cyst has remained the same. Will get results to (along with blood tests) to the specialist surgeon next week.

Needless to say, that this has caused a lot of stress and heartache to myself and my wife. There were NOT any of the classical signs (jaundice) with our daughter, and she has always been a very active child, and still is. Dancing, ballet, gymnastics (we have stopped them for now).

Since the cyst has not subsided, it will have to be removed surgically.

The specialists and our peadiatrician have told us not to stress. He has said that these operations, although rare, go well, and kids go on to live a normal life.

What sort of surgery are we talking about here ? Will the scars be major ?

Is this true ? In the sense that if it is operated, will it lead to further surgery latter in life ? Will any more complications arise later in life ? Can she go on and live a normal life ? How often to re-evaluations happen ?

Secondly, which hospital/center doctor in Britain is the best in these type of operations ? We plan to have the operation in Greece (the surgeons are competent), but are considering all options. I am just afraid due to the fact that these cases are so rare, that you would rather have surgeons with more experience handle it.

3 Replies

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  • Hi JoeKapa, I am sorry to hear that your daughter has been diagnosed with a C.cyst, it must be very difficult knowing that your daughter needs surgery, the surgery here in the UK has great outcomes and CLDF have written a leaflet for families who receive treatment here childliverdisease.org/Infor...

  • Hi there, our daughter had surgery for removal of a choledochal cyst in November last year. She was 2 and half at the time and suddenly became very poorly with severe stomach pains. We were admitted to our local hospital and over the next few days she developed severe jaundice, they ran lots of tests and we discovered on around day 4 it was choledochal cyst. This was after the doctors at our local hospital were in discussion with the doctors at Kings College Hospital in London (liver specialists). It was a very frightening time. Our daughter was suffering from cholangitis (infection of the bile duct) due to the cyst blocking her bile duct. She spent 3 weeks in hospital on IV antibiotics and her surgery was booked at Kings a further 4 weeks down the line.

    We were in the same position as you and were extremely worried and scared at her having this procedure.

    The operation went very well and 4 months on we have had no complications. I believe there can occasionally be situations where as they grow they may need further surgery but this is rare and I would really encourage you to get the information from CLDF on Choledochal Cysts as it was invaluable to us and explains the operation really well among other things.

    Our daughters scar is fairly long (about an inch above her tummy button, then a very straight line all the way to her side) but it is extremely neat and already looks brilliant, we are confident as she grows it will fade considering how good it looks after just 4 months.

    I hope your daughters surgery goes well and wish you well for the future

  • Hello, my daughter was born with a choledochal cyst type 2. It was found in my 23 week ultrasound. We live in the USA. my daughter was born a week early so they could monitor it more. She was very jaundice when she was born. At 8 weeks on September 12th 2011 she has surgery. It did leave a pretty big scar but I now have a healthy 4 year old girl. If you would like to see pictures of her scar she is on the childrens liver disease site under the embrace your scar. Seraiyah is my daughter's name. ☺ it is very stressful but we'll worth the surgery.

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