Amazing Things: Lyla Grondin

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.

After learning Lyla’s symptoms and that there was construction in the area where the family lived, Dr. Wolf diagnosed infant botulism, a rare disease that attacks the nervous system. The spores that cause botulism can be found in honey or dirt. If left untreated, infant botulism, which affects about 75 infants a year, can lead to debilitating breathing difficulty or even death as nerves and muscles shut down.

Dr. Wolf immediately put a plan into place to save Lyla’s life. The hospital dispatched an ambulance with Dr. Sheemon Zackai aboard, then a pediatric clinical care fellow at NewYork Presbyterian/Weill Cornell Medical Center. Dr. Wolf also contacted the California Department of Public Health to order the medicine known to halt the spread of botulism. Since the medication is only produced in California, the hospital had it shipped overnight.

When Dr. Zackai arrived by ambulance at their local hospital, Heather says she felt an immense sense of relief. “He was so calm and so competent,” she recalls. “He got a line into Lyla’s arm in seconds.” Once Lyla was stabilized, they rushed her to The Komansky Center for Children’s Health at NewYork-Presbyterian/Weill Cornell Medical Center, about an hour’s drive, where a team of specialists was waiting.

After receiving her medication, Lyla spent 2½ weeks in the pediatric intensive care unit. The botulism had weakened her muscles and nerves, and one of her lungs had collapsed. Lyla was sedated and intubated for about 14 days because she was unable to breathe on her own. She received nutrients through a feeding tube, and her doctors monitored her vital signs around the clock. She underwent respiratory therapy to clear her lungs.

As the medication slows the progress of the botulism, the body has to repair itself to fully recover; healing from botulism is a case of “wait and see.” It is impossible to pinpoint how or where Lyla contracted botulism; the incubation period can be lengthy. Her doctors guessed it was airborne since she had never had honey.

When Lyla was released, her body had regressed to the muscular ability of a newborn. She would again have to learn to sit up, smile, clap, and roll over. Her suck reflex had been weakened and, as a result, she was nursing around the clock. Heather took Lyla to physical therapy three times a week, where Lyla’s therapist helped her rebuild core muscles by placing her on a mat, moving her legs and encouraging her to roll over and sit up.

By December, about four months after leaving the hospital, Lyla turned a corner. She was sitting up and rolling over. Heather says she didn’t allow herself to exhale until Lyla turned 1 in February 2010. That’s when the Grondins celebrated with a party at their home. Among the guests: Lyla’s physical therapist, nurses and doctors.

“The party was a huge thank-you to all the people who had helped and prayed for Lyla,” says Heather.

Today, Lyla is a healthy 7-year-old who is a big sister to Ella, 4. Lyla’s favorite activity is dancing, whether ballet, tap or jazz, and she also enjoys swimming, reading, drawing, nature and animals.

“She is amazing,” says Heather. “She’s an old soul who has so much wisdom and is kind, loving and spirited.”

When asked what she wants to be when she grows up, Lyla has one fitting idea.

“When I grow up, I might want to be a doctor.”