When Carlito* was born in 2010, he was diagnosed with the most severe form of cri-du-chat (French for “cat’s cry”), a genetic condition that causes a wide range of developmental problems. Doctors gave him a year to live. “But somebody forget to tell him,” says nurse Marilyn L., the Clinical Support Manager for VNSNY’s pediatric palliative care services in Brooklyn.
As a baby, Carlito was in and out of the hospital with repeated bouts of pneumonia. Unable to stabilize him, hospital clinicians wanted to admit him to a long-term-care institution. But fortunately, one of Marilyn’s pediatric palliative care teams had recently taken on his care. With the support of his mother, Elena*, the care team staff presented their case to more than a dozen physicians and got a green light to continue caring for him at home.
The interdisciplinary team of nurses, therapists, and a tireless social worker got busy formulating a comprehensive care plan. A key part of the plan involved educating Elena about the complex challenges of managing Carlito’s condition. Because his cri-du-chat is so severe, he has the full range of symptoms: respiratory issues, seizures, developmental delays, and feeding problems that have slowed his growth. Although he was 20 months old when Marilyn was assigned to his case, his tiny frame made him appear much younger.
While he’s still dealing with many of these challenges, Carlito is living an active life. He attends a cerebral palsy school for physically challenged children, accompanied by a nurse who rides with him on the bus to and from school and then stays with him for four or five hours after school. The family’s home is equipped with devices and machines to aid his breathing. Every morning, Elena administers therapies to her son so that he doesn’t get congested during the day. After school, the nurse repeats the treatments. “It’s a lot of work,” says Marilyn. “But for someone who wasn’t even supposed to be alive, he’s living a happy life.”
A former pediatric intensive care nurse, Marilyn has been with VNSNY for 20 years, and has been an integral part of VNSNY’s pediatric palliative care services for seven of them. The goal of these services is to decrease pain and suffering and help children with severe illnesses avoid hospitalization, and to provide emotional and educational support for their families. Despite the severity of their conditions, children who receive pediatric palliative care are not necessarily terminal. (Should a child approach the end of life, VNSNY has the ability to transfer the child to its hospice service.) “Our palliative services are for children who have a life-threatening, life-limiting illness,” says Marilyn. “That means that when the child gets any type of diagnosis, even though they’re not at end of life, we’re able to step in. This is an overwhelming time for families, so it’s important that we start both the healthcare and the emotional and educational support immediately.”
As Clinical Support Manager, a large part of Marilyn’s day is spent doing phone consults with team members and accompanying them on joint visits when they request her input or need her Spanish-language skills. To help share her knowledge, Marilyn also teaches an interdisciplinary course on pediatric palliative care for nurses, social workers, bereavement and spiritual-care counselors, and administrators. “I went into nursing to help change lives,” she says. “If I can’t do it here, I can’t do it anywhere.”
* The names of the patient and his mother have been changed for privacy.