It was mid December and we were looking forward to our first Christmas with the latest addition to our family, Matilda, born on 29 November 2013. Already her three siblings were madly in love with their tiny sister who was happily settling into the family, sleeping when she should and, to my great joy, feeding well, as she was the first of my four children that I had been able to breastfeed.

However, despite feeding frequently and appearing very content, Matilda’s weight was causing some concern to the baby health practitioners. Some friends and family had also commented on her skin colour, which was a little jaundiced, but examinations by a paediatrician and a few baby health nurses brought no particular issues. 

With Christmas less than a week away, it was tempting to defer a scheduled visit to the baby health clinic. Thankfully I didn’t and the need for a nappy change during the visit gave Health Nurse, Beverly Lacey, a chance to see the unusual chalky white colour and texture of Matilda’s stool.

Alarm bells rang immediately for Beverly, the chalky, white stools and mild jaundice are classic symptoms of a liver disease called Biliary Atresia. Within days, Matilda was a patient at The Children’s Hospital at Westmead and by Christmas Eve, it looked like Matilda’s gall bladder & bile ducts were not functioning properly and her liver was being compromised. We went home to join the family for Christmas, returning to the hospital a few days later. It was a rather anxious occasion and, at the time, we felt it was one of our worst Christmases.

Later we realised that we had been given the best Christmas present ever! Through early detection and diagnosis, Matilda had surgery when she was just over 4 weeks old. The surgery, known as the Kasai Procedure, involves grafting a portion of the small intestine to the liver to drain the bile. The success rate of this procedure is significantly higher if it is performed when a child is under six weeks of age.

Close monitoring is an ongoing requirement with regular visits to the liver clinic at Westmead Children’s Hospital to assess liver function, growth and nutrition. Matilda also remains more susceptible to infection. All fevers are potentially threatening as they may be a sign of cholangitis, an infection caused by bacteria travelling from the intestines into the liver, potentially further compromising the liver. We had several hospital stays during her first year with infection, high temperatures and unsatisfactory liver function levels. Despite these, Matilda continues to thrive, meeting her milestones and exhibiting the strength and determination that saw her through the initial trauma of her surgery.

Every day, as we watch our little one laugh and play with her siblings and she wobbles over her first shaky steps, we are reminded of how lucky we are that Beverly was on duty when we visited the Health Clinic that day in December.

As I had not breastfed my earlier children I did not place any significance on the colour of Matilda’s stool, attributing it to breast milk rather than formula. While the comments on her skin colour had caused come concern, it was not excessive and she had been checked for jaundice by a paediatrician who did not think to ask about her stools. Other than a slow weight gain, Matilda was a happy and contented child but the signs were there if I and the other health workers had known what to look for. Fortunately for us, Beverly did and we can now look forward to watching Matilda’s continued growth, happiness and good health, inspired by the following words which adorn her bedroom wall and remind us of how very special she is:

“… You're braver than you believe, and stronger than you seem, and smarter than you think.”       – A. A. Milne