For a while, everything was perfect. Brandi, Michael, and Merrick “literally floated on clouds.” At their two-week check up, the new parents voiced their concerns that Merrick wasn’t moving very much. The doctor assured them that he was just a “chill” baby.
But one month later at his six-week check up, things became very scary, very fast. Brandi pushed for a pediatrician to see her son, and as soon as he did he recognized symptoms of severe hypotonia, or “floppy baby syndrome.” Baby Merrick was rushed to the Emergency Room when he fell suspiciously pale and a triage nurse did some preliminary tests, including testing his blood oxygenation. Her face turned as white as a sheet. “It says 45%,” she told the worried parents, “but there’s no way that’s right. Most people are at 98 or 99%. He’d be unconscious.”
But that reading was right. Merrick was hooked up to monitors immediately, held in the Italian PICU for four days, then medically evacuated to Walter Reed National Military Medical Center, and it was there that Michael and Brandi’s “every fear came to fruition.” Their son had SMA Type 1, a neuromuscular disease that robs the patient of the use of their muscles.