After she had taken her sons home, though, Casey made that fateful discovery about their breathing. Still, doctors only believed that this was due to the hernias both boys had been born with. As a result, surgery was performed on the two-week-old babies, after which specialists had asserted that their health would improve.
Of course, Casey and her husband, Brian, kept a close eye on the boys during their first few weeks of life – not least because they had a feeling that their children’s problems weren’t over yet. “We didn’t know what it was,” Brian told The Chronicle. “We just knew that something wasn’t right. They were also slowly getting behind with their milestones.”
And unfortunately, things did indeed seem to gradually get worse. When Bryce was four weeks old, for example, Casey found blood in his diaper. One specialist believed, however, that it was simply due to an allergy to cow’s milk. And even more disturbingly, at the age of just six weeks, Baen suddenly began to suffocate. As Casey explained to The Chronicle, “He just turned blue on me.”
So, as the medical problems became more and more serious, Casey and Brian were referred to specialists at the Cleveland Clinic. They, however, suggested that Bryce and Baen may have a serious condition. Dr. Vickie Zurcher, the boys’ pediatric geneticist said, “[We] recognized that the Hurst brothers had a possible storage disorder at their first appointment, primarily based on the twins’ facial features.”
Although the babies appeared healthy, they had coarse features, with thicker-than-normal gums and arched pallets. These, combined with the already-detected symptoms and numerous physical problems exhibited in the boys, indicated to doctors one possible cause: Hurler syndrome.
On November 1, 2011, that diagnosis was confirmed – and the prognosis for the pair was not good. Some Hurler patients don’t make it to age five, while many more won’t see their tenth birthday, usually due to cardiac arrest or constricted airways. There is also currently no known cure for the condition.