Chloe’s Story.... so far!
When Chloé was 2 days old, we were told she was suffering from a touch of jaundice. As much as you don’t like to hear of anything being wrong with your newborn baby, it seemed all very routine and they would simply just pop her comfortably under the blue lights for a night which should help with her billirubin levels. The following morning, the nurses in NICU seemed happy enough to take her out, however they would need to keep monitoring to ensure the levels didn’t increase again!
Little beknown to us at the time, there are two types of bilirubin, one that had responded to the light therapy, and one of that was strangely increasing. The blood tests were sent to Westmead for assessment and an ultrasound on her tummy was ordered where they found a cyst on the common bile duct, which may have been blocking some of the flow of bile from her liver, or so we thought!
Every 2nd day Chlo was having blood tests, and even after we were discharged from hospital, we still had to go back for blood tests. We were then called in on Thursday 6th June as the team at Westmead had met regarding Chloé and our doctors at Orange wanted to tell us their findings.
We were told our worst fears and that they believed Chloé had Biliary Atresia and we would be required to head to Sydney where they would undertake further investigation and potentially need to do an operation.
We headed to Sydney on Monday 10th June and were at admitted to the Clancy ward at Westmead Children’s hospital, where we stayed for 3 weeks. All very daunting and we were feeling very apprehensive about what our stay in hospital had in store. The following day, Chlo had a DISIDA scan and from there the doctors concluded and told us it was almost certain that Chloé had Biliary Atresia and they would need to perform an additional scan in surgery and probably proceed with an operation called a Kasai procedure to remove non-functioning bile ducts and attach part of her small intestine directly to her liver.
The following Monday, the 17th June, one day short of her being 3 weeks old, I handed our baby girl in to the arms of the anaesthetist who took her off to theatre for what would be a horribly agonising long 6 hours whilst the amazing Dr Alexander performed the Kasai on our precious little Chlo.
Chloé is only 5 weeks old and for now, she is doing relatively well and is very healthy on the outside, however the procedure she had is a non-curative procedure. No known cause! No known cure! We will know in the next 2-3 months if the Kasai was successful or not, and then if and when a liver transplant may be needed. We will need to travel to Westmead regularly for check ups.
Biliary Atresia is a very rare liver disease and there is no known cause or cure! Chloé will need lifelong care for her condition and is currently receiving 8 medications and supplements a day. The best chance a baby diagnosed with this disease has at survival is a liver transplant at some stage in their life so please help by supporting The Liver Transplant Unit at the Westmead Children’s Hospital by joining us, Chloés Happy Feet on the 28th July for a walk at Narrabeen Lake or by simply donating.
The care Chloé has received has been absolutely amazing! The whole liver team and the staff on the Clancy ward are phenomenal and need our support!
Help us support the Liver Transplant Unit at The Children’s Hospital at Westmead by sponsoring us at Leaping Livers Lapping the Lagoon 2019
The Liver Transplant Unit at The Children's Hospital at Westmead relies on the generosity of supporters to be able to help those in need. Funds raised through events like Leaping Livers are crucial in enabling them to continue their work.
We believe it's important to raise awareness of childhood liver disease and liver transplantation. Please support us as we challenge ourselves to complete the 9km circuit at Leaping Livers 2019!
Thank you to my Sponsors
Accommodation Association Of Australia
Archie, Maeve, Ned & Bridie Xo
Thomas, Hugo And Louis O’brien