I’m very happy to share our experiences as it was very daunting when my daughter Mya was first diagnosed with a choledochal cyst.
When we went for the 20 week ultrasound scan we were told that they had found a cyst in in our unborn baby girl’s abdomen. At that time doctors believed that it may have been a cyst on our baby’s ovary and they suspected this all the way throughout my pregnancy. I had regular scans throughout to monitor both baby and the cysts growth. The cyst did not appear to grow too much during that time.
Mya was born safe and well on 27 February 2013 and the following day she had an ultrasound and then an MRI scan. It wasn’t until we were discharged (we were in hospital for 5 days due to Mya having jaundice) that we found out that the cyst was a choledochal cyst and then what that meant for Mya. She would need to have a big operation at King’s College Hospital in London.
When Mya was 13 weeks old we travelled from Aberdeen in Scotland to King’s College Hospital in London, leaving Mya’s two and a half year old brother at home with his grandparents. The support from the nurses was second to none. They were brilliant in letting me take a role in caring for my baby and even allowing me to administer some medications, which helped me feel useful especially in the days when I couldn’t feed her or hold her.
The operation involved removing Mya’s common bile duct, where the cyst was growing, as well as her gallbladder then re-routing Mya’s own intestine to form a new bile duct. We were told at the time by Professor Davenport, who was also amazing and very reassuring, that Mya’s liver looked physically healthy and they did not expect anything to come out of the liver biopsy they took whilst doing the operation.
Mya shortly after her operation
Mya recovered much quicker than we expected, she was a little star, when the epidural wore off the pain management nurse was a regular visitor and our baby girl was never in pain or uncomfortable. We were back home within 8 days of being admitted (we were told to pack for three weeks).
A few weeks after returning home we received a letter with the results of her biopsy which had shown up that she had periportal fibrosis and ductal plate malformation. They cannot explain why or what this may mean for Mya as she grows up. It may be that this is very early stages of one of two different types of liver disease or that Mya may grow up being totally unaffected by what they have discovered in her liver. She is now almost 4 years old and she is a beautiful happy and healthy girl.
We are now having only annual check-ups at our local hospital which offers a joint clinic along with King’s. Mya will have annual blood tests and an ultra sound as she grows up and to date our doctors continue to be very happy with her progress.
Sarah, Steven and Mya
Thank you for sharing your story and helping raise awareness of choledochal cysts. If you have been inspired to share your own story please email firstname.lastname@example.org.