Mel talks with Julianne Lennard, Cassie Maree’s Mum. This beautiful family needs our help.
Cassie Maree was born in February 2020, and is a little sister to Matilda Fay who was also born in February, but 2018. A perfect two year gap means the girls can grow together and learn together… then this…
Cassie was diagnosed with liver disease after I had taken her to the child health nurse during the absolute height and panic of the COVID-19 early stages at the start of April 2020. I was concerned about her “failure to thrive” as she just wasn’t gaining weight, was very fussy, and was a bit jaundice too. Something just wasn’t right… Nothing to worry about you know, but I better just get her checked out to put my mind at ease….
That didn’t happen. After the nurse stated that she shouldn’t be quite so jaundice at 12 weeks of age, and that it should go after about 6-8 weeks or so, she ordered blood tests and an ultrasound, and within 24 hours plans were being made for us to fly to Westmead in NSW. Her liver was 2-3 times the size it should be, pushing all the way down to her hip.
But wait! Covid now exists right? So flights are stopping, borders are shutting and people are panicking… so we stay at the Royal Darwin Hospital to try to obtain a clearer diagnosis before we head off… we stay in Darwin for a month waiting for a diagnoses while doing test after test after test after test… it was gruelling.
Well we nearly got a diagnosis, and it looked like the liver disease was at first going to be “aligilles syndrome”, a disease that affects heart, liver, spine, can have prominent facial features/deformities and eyes issue aswell… great
But after more, and more, and more, and MORE tests, we discovered this thing called Bilery Atresia.
So unlike a genetic disease which can be passed on from one parent to their child, this disease has unknown origins and is quite rare. And there is no cure. You need a new liver…
Bilery Atresia babies livers begin to deteriorate even before birth in some instances, which is why at only 13 weeks Cassie already had a liver with cirrhosis (irreparable scarring causing failure and in some cases cancer). See the Bilery, or draining system at the bottom of the liver simply begins to die off. Literally. So after surgeons took their first look to try to do a Kasai Procedure (cut out the bad parts and bypass the liver Bilery system, to attach directly to the bowel to enable the liver to drain) they realised that her liver was far too damaged to attempt this, and I was told that her liver was “rock hard”. A bit like a pumice stone you use on your feet.
Anyway, that is Bilery Atresia in a nutshell, and it requires a Liver Transplant for 99% of those who are diagnosed. Even for those who are able to have the Kasai Procedure.
So it’s our time! We have waited to try and get Cassie bigger and stronger, and to be able to get a few more essential vaccinations into her before hand aswell. We’ve been lucky. Cassie is an absolute trooper! We hoped to get her to 8kg, and have so far managed a whopping 7kg!
Although now I can truly see that she is slowly weakening as time goes on. It is incredibly difficult to watch a small baby, let along YOUR small baby, get sicker and sicker, knowing full well that without a transplant for sure her liver will fail, and she will die without that transplant. That is not a nice pill to swallow. We are very lucky in Australia, however. So many other countries don’t perform the operations and if they do it costs tens of thousands of dollars.
On the very very bright side! We have an amazing team around us at Westmead and they were the very same team of professionals who performed the very first Australian, living donor transplant from an adult to a baby. And, saved that baby’s life. Incredible…