For first-time parents Shae and Robert, joy quickly turned to fear after a long wait for answers revealed that their newborn son had a rare and serious condition – Gestational Alloimmune Liver Disease (GALD).

GALD occurs during pregnancy when a mother’s immune system mistakenly sees the developing baby as a foreign object and produces antibodies. These antibodies attack the baby’s liver cells, causing neonatal hemochromatosis, inflammation, scarring, malabsorption issues and sometimes severe liver failure even before the baby is born. Sadly, one of the biggest challenges with GALD is getting the diagnosis.

“There is no test in pregnancy, and once the baby is born, there is no immediate test either. Doctors have to just wait for the baby to present with a certain set of symptoms. From there, they decide whether to begin treatment because often, they don’t know if the treatment will be effective with no diagnoses,” Shae explained.

Confirmation of a GALD diagnosis often depends on a liver biopsy – a procedure many babies are too fragile to undergo. Tragically, GALD is highly time-sensitive, leaving no chance to wait until a baby is well enough for the procedure. For Shae and Robert, becoming new parents meant navigating a diagnosis with limited research, no routine testing, and few clear answers for a condition so rare that even world-leading specialists could not offer reassurance.

Doctors at the RCH suspected GALD early and made the life-changing decision to act. With no confirmed diagnosis and little time to spare, they began treatment immediately.

“The doctors told me they felt more confident explaining to a parent that their baby needed openheart surgery than telling me that Archer needed this treatment,” Shae shared.

Archer had to undergo a double-volume blood exchange at just 10 days old. This was a complex, eight-hour procedure performed overnight in the Neonatal Intensive Care Unit, involving a large, highly specialised medical team.

“They told me they didn’t know if it would work – and if it did, we wouldn’t know for about six weeks,but we couldn’t wait for treatment as he may have not been well enough for treatment in a weeks’ time,” Shae said.

Nearly nine weeks after he was born, his parents’ worst fears became a reality. Following a routine MRI that raised more questions than answers, doctors were forced to perform a liver biopsy to investigate large, unusual nodules on his liver. The results confirmed that Archer had GALD.

Fortunately, by then, he was already starting to improve. Slowly but steadily, the treatment was working, and Archer was cleared to go home after a long nine-and-a-half-week journey at the RCH.

Today, Archer continues to be monitored by the liver team, with regular blood tests and ultrasounds. Although he is doing well, Archer and his family are still living with deep uncertainty.

“Doctors are honest when they tell you they don’t know what comes next, because babies with GALD don’t always make it this far,” Shae shared. “We’re not completely out of the woods, but he’s not right at the edge anymore. For now, time will tell,” she continued.

With few answers and limited research to rely on – including the possibility of a liver transplant in the future – they face each day not knowing what comes next, leaning on both hope and the excellent care of the RCH.

“What was terrifying from the outside became slightly more manageable because of the people. The doctors, nurses, social workers – everyone. It’s amazing the support system you’ll have outside your family,” Shae highlighted.

Archer has just celebrated his first birthday with a trip to the zoo and a truly meaningful birthday party. To anyone meeting him now, he’s a curious toddler who loves anything with a steering wheel and exploring the world around him. But what isn’t immediately visible, is just how extraordinary this milestone is for him and his family.