If you are the parent of a newly diagnosed Liver Kid, or you have a Liver Kid who has recently had a transplant you will have a lot of questions about your child’s future. You want to know whether they will have a normal life, or whether your family will ever get away from hospital life, or whether having a transplant is just switching one problem for another.
My Liver Kid is nearly 9 years post-transplant, so I thought it would be worth sharing our experiences so that you can see that there really is light at the end of the tunnel you find yourself in. Of course, every child’s experience is different, and I’m not a doctor, but I have been where you are now and come out the other side.
I won’t go into the entire pre-transplant story. It’s enough to say: biliary atresia, failed Kasai, transplant at 16 months old. One major difference between then and now though is that there was a real shortage of donors when my Liver Kid was on the waiting list, and many children were a lot sicker before they got a transplant than they are today.
But, to get back to the point of this post, what is it really like having a Post-Transplant child? Well, the short answer is that her life is no different to any other kid her age. She goes to school, she plays with her friends, her bedroom is messy, and she loves her family. Of course, we take good care of her health and we’re pretty focused on hand hygiene. We all have a flu shot each year to help protect her, and we are very careful with sun protection. She sees her Liver Team 4 times a year and has a blood test each time. She has an ultrasound once a year, and 3 years ago she had a routine biopsy as part of her post-transplant protocol.
She has not been admitted to hospital due to a fever for 3 or 4 years, in fact I honestly can’t remember exactly when it happened last. Initially we were worried that she would become terribly sick whenever she came into contact with illness, but that hasn’t happened. When she gets a cold, it’s just a cold and she is no sicker than anyone else in the family. In fact, she has to see our GP less frequently for minor illnesses than our older daughter.
That’s not to say that we are casual about her health, we do take it very seriously. If she is unwell we watch her closely and if in doubt we take her to our GP. But most of the time her transplant is just a normal fact of life and the routines around it like taking meds twice a day are just another thing we do, like supervising homework or planning dinner. These days she only takes 1 tiny capsule twice a day, nothing like the amount of medication she was on immediately post-transplant.
Because she was so little when she had a transplant, everything about her health routine feels normal for her. She doesn’t like having her bloods done (who does?), but she knows it is just something she has to do. She doesn’t really feel any different to other kids, and she does pretty much everything that other kids do. She has been on school camps, and gone to sleepovers. We go on holidays and hang out with other families. Although we take special care of her, we don’t wrap her up in cotton wool and keep her away from other people. One day she is going to be old enough to make decisions about her health for herself, and we want her to know that it is OK to do most of the things that other people do.
I remember that before our daughter had her transplant one of the consultant nurses gave me some great advice: ‘Liver transplant is the only treatment for biliary atresia, but the good news is that it’s an excellent treatment.’ In our experience that has definitely been the case.
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More about growing up post-transplant
Transplant recipient Libby Mutimer gave a great presentation at the 2016 Liver Kids Conference and Family Day about growing up post-transplant. See it here
Liver Kids Australia has a network of experienced families who can provide support and advice whatever stage of liver disease diagnosis and treatment you are up to. Contact Rachel on 0407 061 634 or at firstname.lastname@example.org