Choledochal cyst, treatment, outcomes

[Arsha36]

I'm 23 weeks pregnant with a boy and was told he has choledochal cyst, we will schedule an appointment later in the month with a pediatric surgeon to come up with a plan for him after he is born. There a so many mixed posts about outcomes but I'm glad to have found people in similar situations. I'm scared, nervous and hoping to find someone in similar situation or someone who had been in my situation.

[Shutt_01]

Hi Arsha, my daughter had a choledochal cyst though it wasn’t discovered until age 2, unlike yours which has been discovered in pregnancy. With my daughter although there may have been signs something wasn’t right they weren’t enough to raise concern with a GP or myself so by the time it was discovered she became poorly quickly with cholangitis (an infection in the bile duct) due to the cyst, she was also very jaundice and had white stools. It took around 5 days for them to diagnose at our local with guidance from Kings College Hospital in London. Once she was recovered from her infection she had her surgery at at Kings a few weeks later, like you we were very scared and unsure of what was to come. Her surgery went very well and she has so far remained very well ever since. She’s now almost 6. Her scar is incredibly neat and isn’t pink anyone we’ve bought her up to know how special her scar is because it made her better and she’s very proud of it! She is now down to yearly checks at Kings.

We worried for a long time after the surgery especially if she complained of tummy ache and that worry is now tucked to the back of our minds as she’s so well.

Write a list of questions before you go for your appointment of things you’d like to ask as you can easily forget once you are there as it can all be very overwhelming. Check out the Children’s Liver Disease Foundation Foundation they are great for offering advice and can send packs out specifically to your child’s condition.

If you are on Facebook there is a page called Liver Mums and another called uk liver parents and families- you can post any questions in there and know you have the knowledge and support of those who have had similar experiences. Good luck I hope this helps. Ruth x

[Arsha36 in reply to Shutt_01]

Thank you

[Hidden]

Hi Arsha - If you would like me to send you an information pack and an information leaflet on choledochal cyst you can give me a call on 0212 212 6028

Regards - Jacquie

[Sophie246]

Sending you strength, to help you through this difficult time

[Arsha36 in reply to Sophie246]

Thank you Sophie

[Emma-2]

Hi there, my baby is just going on 4 months and has this cyst to. They found the cyst when I was 16 week pregnant but weren’t quite sure what it was. So it great you know what the cyst is. When Chloe was born she was fine and got scans and this is what they told me she had. Basically they don’t treat it straight away if they don’t have symptoms. The surgeon said he would hope that she gets to 18/24 months before he operates. So in the meantime she gets check ups from the liver drs and scans with the surgeon to keep n eye on it. Hope this helps send me a message if you have questions. Of course this is just what they are doing for Chloe and it’s diffrent for diffrent babies and hospitals but thought I would share what was going on with my baby as you are the first person I have saw saying ur baby has this. Send my love and wishes for a speedy delivery for you xx

[Arsha36]

Thanks Emma, I'll keep in touch.we are meeting the surgeon on July 2nd.

[toni54321]

1 in 500,000 people have this disease

[toni54321]

My daughter had the surgery 29 years ago and is now having some complications

[Arsha36 in reply to toni54321]

How old was she when she had her surgery? I hope she gets better soon, I'm due next month,just praying all goes well

[Emma-2 in reply to toni54321]

Hope ur daughter gets better soon.

[toni54321]

One day old

[Arsha36 in reply to toni54321]

I hope she pulls through, keeping her in our thoughts and prayers.