“You’ll sleep at night and rest easy knowing that your child is not just taken care of, but loved.”
That’s what Rachel Amar, the mother of Max, a ventilator-dependent child who resides at the Elizabeth Seton Pediatric Center, said she would tell the families of the 32 ventilator-dependent children who will soon be able to the call the Pediatric Center home as a result of the Hummingbird Campaign.
Rachel hasn’t always been able to have this peace of mind about her son and his care, though. Prior to the Pediatric Center, Rachel and Max faced a difficult and uncertain journey together, which began when Max was born premature at 32 weeks. Max was born with brain stem atrophy, a diagnosis that doesn’t allow him to breathe, swallow, regulate his temperature or move on his own. For the beginning of his life, especially the first two months, Max’s condition was very unstable. He spent almost his entire first year in the NICU and then the PICU before being transferred to an acute rehabilitation facility at 8-months-old.
However, after about a year, Rachel realized that acute rehab was not an appropriate fit for her son. “He had stopped receiving rehabilitation therapy and they did not want to take on the liability of sending him to school, so he really was not getting anything,” she said. That’s what spurred Rachel to begin to search for a facility that could not only care for her ventilator-dependent child from a medical standpoint, but also one that could provide him with the dignity, love and experiences he deserved.
But what she found was that at that time, there were no facilities in New York State that could provide what she and Max so desperately needed. So, Rachel took action; she wrote letters to local and State politicians, contacted local news stations and, eventually, she got the attention of the New York State Department of Health. The Department of Health worked with Rachel to search for a place that could deliver long-term, ventilator care for Max and other children like him in their home state of New York. When they, too, discovered that there was no facility to meet these requirements, they asked Pat Tursi, the CEO of the Elizabeth Seton Pediatric Center to develop the first program of its kind in the State.
“When the Pediatric Center agreed to take Max and they started preparing for it, I just couldn’t wait … I was so happy,” Rachel said. On August 21, 2006, Max was the first ventilator-dependent child moved to the Pediatric Center. Within three weeks, three additional children joined Max in the Pediatric Center’s Long-Term Ventilator Care Program. “Max started going to school for the first time in years and I knew he was receiving great care. Plus, driving to Manhattan [from my home in Long Island] was the closest I had been to my son in years,” Rachel said.
When the Elizabeth Seton Pediatric Center relocated to their brand new, state-of-the-art facility in Yonkers in 2012, Rachel was thrilled. “I know it’s better for Max,” she said. “It’s all in the ambiance. The facility is bigger, the building is beautiful and child-friendly and I can take Max outside. More than anything, though, it’s the feeling that we’re in a home, not a hospital.”
Rachel also lauded the staff for their involvement. “There’s no other place like this. It’s truly more than just a job for the staff here; their love is genuine and they take being ‘caregivers’ to another level,” she said. “I finally have peace of mind when I leave my son for the day.”
“When I come here, it’s relaxing,” Rachel continued. “I look forward to it because I know that Max is happy, clean, cared for and attended to. That means that when I visit, I can just enjoy being with my son,” she said. “Some days, I accompany him to school and other times we just lie in bed together and read but, each day, I get to kiss him … and I kiss him like crazy!” Rachel laughed. “Once I get that smile, my whole day is made.”