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.