My daughter had kasai procedure end of June this year for biliary atresia and we are looking at going abroad to lanzarote next year (june) for a week. She will be just over 1 when we go.
Have you been abroad with biliary atresia and what did you do or how did you deal with it? I am just worried if something happens while we are out there related.
Hi, we have tried a couple of times to go abroad following kasai but we weren't very lucky as our daughter kept having infections. I guess the main risk post kasai is cholangitis, which means at first sign of fever they need to be brought into hospital for IV antibiotics (7-10 days or more). So wherever you go you might want to check there is a good hospital with a good paediatric ward that could deal with this. If she keeps stable and with no infections in the next few months, she might be absolutely fine as we were told the highest risk for cholangitis is during the first 12 months post kasai.
Also, when you fly make sure you have a letter from the consultant to allow you to take meds in your hand luggage - just in case they get messed up with other flights and then you're left with no meds for days. Good luck!
Thank you! I will do some research for the hospital . The worry is being abroad with a rare condition that they may not know anything about or getting the correct treatment. We have just come out of an 8 day trip to the hospital due to ascites and suspected cholangitis. We are in 2 minds of what to do! As I know if they get cholangitis they are suspected to get it again around 9 months to a year! My little girl was only 8 weeks old when had it done and it now 5 months old in 10 days. She will be 13 months if we manage to go.
In our experience cholangitis can be very unpredictable. We never managed to get rid of it and 'normal' life out of hospital only started once she had her transplant at 9 months! Every case is so different, but in general hearing other parents, I'd say the first year is a rollercoaster and very bumpy. Make sure you get travel insurance too! X
Hi hun. My advice would be not to go until she has had at least 1year without cholangitis or any hospital stay. You need to look at specialist medical insurance as you may struggle to get it or it will be very expensive. We use World First travel insurance as they go on medication and admissions rather than purely on diagnosis.
You won't get insurance if she is awaiting any investigation and you must be honest otherwise they won't pay.
I know it's hard and seems really unfair but at this stage I wouldn't risk it.
You won't relax and enjoy the holiday because you will be so worried and will never forgive yourself if she became ill and couldn't get immediate treatment.
Our daughter had cholangitis almost constantly for the first three years then it settled. She is now 14 years old with her own liver and no medication. We go abroad now but I wouldn't have risked it when she was younger. Give your little girls body time to battle the disease and the liver to settle. Also, investigate the rise in measles on the continent as she won't have had MMR at that stage. Please don't risk it, just for a week in the sun!
Hi CLDF have some really useful advice about going abroad on our website here:
childliverdisease.org/paren...
There is also some insurance companies that other families have used and recommend.
If you live in the UK you can sign up to get regular updates and support from CLDF (for free) here:
childliverdisease.org/cldf-...
If you don't live in the UK you can download our medical resources on our website
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