In July 2009, Heather Grondin and her family took a day trip from their new home in Summit, New Jersey, to Avon-by-the-Sea, a nearby beach town. Heather and her husband, Pete, knee-deep in boxes, needed a break from unpacking, and their kids were suffering from cabin fever.
Baby Lyla, who was 4 months old at the time, had been fussy all week. She was not nursing normally and had been constipated. Heather thought Lyla was just out of her routine. At the beach, Lyla snoozed in the shade while her brothers, Jack, 4, and Ryan, 2, built sand castles and splashed in the water. Once home, they fell asleep early, tuckered out from a day in the sun.
The next morning, Heather walked into Lyla’s nursery. Something wasn’t right. Lyla couldn’t support herself in her crib, and her cry was weak. She refused to nurse. Thinking Lyla was dehydrated, Heather took her to their local hospital. But the staff couldn’t pinpoint what was wrong.
Then things quickly took a turn for the worse. Lyla became limp, listless and weak. She couldn’t even swallow the water the nurses put on her tongue with a dropper.
“Over the next hour or so, she deteriorated,” Heather recalls. “She was no longer able to move her body. She was literally dying in front of us. Nobody knew why.”
The doctors put Lyla through tests to determine if she had experienced a stroke. They performed a spinal tap to rule out meningitis and encephalitis.
“She was too weak to cry when they did the spinal tap,” Heather remembers. “Her body was shutting down.”
The staff tried repeatedly to insert an IV line but couldn’t because Lyla’s veins were collapsing. Sensing that time was running out, Heather contacted a friend at NewYork-Presbyterian, who put her in touch with Dr. Michael J. Wolf, then a pediatric intensive care unit fellow, at NewYork-Presbyterian/Weill Cornell Medical Center.