On PFIC Awareness Day, we’re very grateful to Rachel for sharing with us the reality of having two children with this rare condition.
PFIC-2 wasn’t a condition I had ever heard of before Wren’s diagnosis when she was just a year old. A month later, Milo was born and suddenly 40% of our household had it!
I think Wren’s diagnosis while I was pregnant was the hardest bit because I felt like I wouldn’t be able to deal with a newborn (who may also be sick) and a very sick baby at the same time. I felt so much guilt that I’d be bringing more chaos in to Wren and her older (healthy) sister Annie’s lives at an already horrendous time.
It is difficult to explain to people the challenges that come with the PFIC diagnosis. The itch was the worst challenge for me as with two in the height of the dreaded liver itch, I just didn’t sleep. They were miserable all the time, all those magical moments you get from babies and toddlers were just lost because they had no joy to show and we were all too tired to create any. I had to enrol them in nursery two mornings a week just to get enough sleep to function.
Wren really struggled to grow, she wasn’t tall enough to hang up her coat or open doors when she started school, and her feet were so tiny she had to wear slippers for her first term. There are so many worries- it is an illness that comes with constant checks and adjustments, there is always something – vitamin levels are too low, blood isn’t clotting, failure to thrive is too pronounced, there’s a cyst on their liver, their spleen has grown, the list just goes on.
They started to hate hospitals and doctors and you dread every blood test. Knowing that transplant is the likely outcome is scary, you never know what will be the final straw that pushes you to going on the transplant list.
In the end, Milo received his transplant when he was two years old and Wren received hers at the age of seven and happily both surgeries were successful. Although both children are still smaller than average, they are now active, busy and enjoy the same kinds of things as others of their age.
Overall, I think having two children with PFIC-2 has benefitted them. It almost gives them a bit of a pressure group – if there is something about their care they don’t like, they have each other to raise it with – two voices are definitely better than one if what you want is to choose where or how blood tests are done or how important it is to get fast food after a hospital appointment. They really understand and support each other, hate receiving sympathy or special treatment from friends and family because they are ‘sick’ and having each other means there is always at least one person not cutting you any slack!
For information on PFIC click here