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Home Blog Saffron's choledochal cyst story

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Saffron's choledochal cyst story

Written by Leanne on 07/02/2017 10:25

My daughter Saffron was born 21st December 2000 in Sunderland... a perfect little 7 and half pound baby with lots of black hair. At about 2 weeks old I noticed she was off her milk, and her dirty nappies had gone a pale colour which I just put down to her not eating, babies go off food I thought. We then noticed her skin had gone a yellow colour. We decided to go to A&E thinking maybe she was a bit jaundiced.

Saffron started being sick bringing up any bottle we tried to give her. The doctor came in and was checking her, feeling her tummy and checking her eyes, then she said that she had to get bloods done. I held Saffron as they tried to get some samples… after 20 minutes they had finally got enough. They had found something but needed bloods to confirm and we were sent to the children’s ward to wait.

Finally the doctor came in the room to tell us they could feel what they thought was a cyst in Saffron’s liver, that she needed an operation asap and that we had to travel to Leeds to have it. We had an hour to get some things together as an ambulance was getting ready to take us down to St James’s Hospital.

We got to the hospital, Saffron had her own little room. The surgeon came in to explain that she needed an operation, something called a Kasai procedure. I couldn’t take it all in, all I heard was that the cyst will be removed and there’s a 50/50 chance it can work, or it won’t and she will need a transplant – they won’t really know until they can see what’s going on.

Hours passed and eventually we could go see her in recovery. My tiny 3 week old baby lying there with so many wires and tubes going into her. They had removed the cyst, part of her liver, gall bladder and part of her bowel.

Saffron

She stayed in hospital for a total of 2 weeks then it was time to go home. We had monthly visits to St James's Hospital, then after a year she had one visit to Leeds and one visit in Sunderland, gradually going to just once a year back at Leeds. Every visit the doctors couldn’t believe how well she was.

Fast forward to the middle of July 2015. We were away on a family holiday to Scotland. Saffron started feeling very sleepy, she had a temperature, couldn’t eat and was being sick, and had gone yellow. We took her to hospital and they discovered that she had cholangitis. She was kept in for 5 days and sent home feeling better. Not even a week later she was back in hospital with the same symptoms and was kept in for 10 days. They explained that the bile ducts in her liver were damaged and blocked. Again she felt a lot better but was now prescribed ursodeoxycholic acid to take 3 times a day and also vitamin K. She was back in by October 2015 and we were told that she has to take antibiotics long term as well as her other medication, and the infection from the cholangitis is lying dormant in her liver and will never go away.

She has now been in and out of hospital throughout 2016 and doctors have explained that they may be able to drain her liver to try and remove the blocked bile and infection, however once the medication stops working a transplant will be next.

We have never let Saffron’s biliary atresia control her life. Yes she has good days and bad but she has her family and friends round her for support and is currently busy getting ready for her GCSEs. She is always on the CLDF website and Hive speaking to other children going through what she is. As a family we also do a lot of fundraising for CLDF too.

Hopefully other families going through what we have can see that there is light at the end of the tunnel.

We’d like to say a big thank you to Leanne for sharing her story and helping us to raise awareness of childhood liver disease. You can find out more about choledochal cysts here, and if you feel inspired to share your own story please email families@childliverdisease.org.