For most families, the days and weeks following the arrival of a new baby are filled with joy. But for one NSW family, the birth of their second son has been overshadowed with fear, confusion, and round-the-clock hospital care.
Born on February 15, Beau appeared to be a healthy and happy baby boy and a highly anticipated fourth member of the McClinton family. But within hours an MRI revealed a different story, showing a bleed on his cerebellum that had formed during pregnancy.
A 10-day hospital stay followed, with the McClinton's remaining by their newborn's crib around the clock. What they could never have known though, was just how much time they were about to spend in hospitals.
Less than two weeks after being discharged from his first stay, Beau was back in the hospital, this time being monitored for what doctors described as "seizure-like activity."
Listen: Hello Bump discuss how much it costs to have a baby. Post continues...
The seizures are frequent and fierce and medication isn't working.
Nearly three months on, Beau's condition remains the same and in one day alone, he is still experiencing up to 40 seizures a day, with most lasting between seven to 10 minutes.
"Beau is certainly the little super hero of our family who has endured way too much for a 12-week old baby," Beau's aunt, Laura Funnell, wrote.
Now, after months of uncertainty, Beau was finally diagnosed with a rare drug-resistant form of epilepsy known as Ohtahara Syndrome last week. And while the McClinton's now have an answer as to what is plaguing their youngest son, the path forward to treatment remains perilously unclear.