For the Sake of Sick Babies
words by Eve Jacobs / photographs by John Emerson
eonatology is frequently a life-or-death, touch-and-go enterprise. When newborns arrive in this world sick or premature, they are often saved by new-world technology and immediate “intensive” care, but after leaving the hospital, they need months, and sometimes years, of follow-up medical attention. In the current healthcare milieu, infants with multiple chronic conditions can be shortchanged as their parents — unexpectedly thrust into this mysterious world of sick infants — move haltingly and stumble like lost children.
Sometimes an idea is born that seems too simple to be a “first.” But neonatologist Edith McCarthy didn’t stumble upon hers. Care Intensive Pediatrics — her brainchild — is like a baby that was nurtured over a period of prolonged growth. She is no neophyte to the world of sick kids. A 1992 graduate of UMDNJ-Robert Wood Johnson Medical School, McCarthy says her life has been filled with the care of children, particularly young ones, since then.
After completing a pediatrics residency at Cornell Medical Center/The New York Hospital, she worked for two years, first setting up for Cornell a “one stop” child protection unit to investigate suspicions of neglect or abuse, and then trying her hand in a traditional pediatrics practice in Watchung, NJ, where her earnings were high, but her job satisfaction low. “It was like a mill,” she says. Neither job answered her own needs — both to be part of an academic community and to spend more time with each child under her care — so in 1997 she began a fellowship at Cornell in neonatology. “I loved it,” she says. McCarthy had her first child, Lauren, now 8, during the last year of her program.
Then followed six years as an assistant professor at New York University School of Medicine, where she taught medical students, residents and fellows, conducted research into osteogenesis imperfecta in the mouse model, and managed the Neonatal Intensive Care Units (NICUs) at NYU and Bellevue Hospitals. It was work she loved and she played a leading role there in saving premature and sick newborns. She also began to realize how terrifying the future looked to many parents coming to terms with the responsibilities of caring for a sick child.
“It’s very hard work being a neonatologist,” says McCarthy. Never one to shy away from tough assignments, she soldiered on, giving top-notch medical care, as well as love and tenderness when medicine hit a wall. “Sometimes all you can do is sit with the parents while they hold a dying infant,” she says, “but that’s worthwhile, too.”
Five babies are born prematurely every hour, says McCarthy, accounting for 1 percent of all births in the U.S. In her career, so far, she has taken care of more than 15,000 infants, both full-term and pre-term. Among the many medical issues facing them after discharge are apnea of prematurity, chronic lung disease, retinopathy of prematurity, feeding difficulty, growth delay, developmental delay, and occasionally cerebral palsy. Unfortunately, the list goes on and on.
Witnessing her daughter Lauren’s normal growth and development, and then becoming a mother again (to Erin, now 6), she grasped how exhausting and hard it is to be an attentive parent. And she was disturbed by the thought that parents in dire need of help often have nowhere to turn but back to a hospital, which can be impersonal, crowded and frightening.
McCarthy also realized that after caring for a baby in the NICU for weeks or months, she wanted to continue her relationship with the child and parents. “Being a neonatologist is like being an extended ER doc,” she explains. “You don’t get to see what happens to the children later on. You’re only there for the crisis.”
Lucky for those in the New York metropolitan area that pioneers still exist in 2007 to challenge what is standard practice. It took not only foresight, but stamina and courage to give up a perfectly good livelihood and invest hard-earned money, time and energy to make this brand new venture happen.
McCarthy’s Care Intensive Pediatrics is the first of its kind, as far as she knows. Neonatologists work in hospitals. But McCarthy can now continue the relationships developed in the NICU and give families of sick children one medical person to rely on.
In fact, March 23, 2007, is a special day on her calendar. It’s the day she saw her first patients in this very special practice on East 32nd Street in Manhattan. As a mother, and a baby doctor, she worked hard to create a place that feels friendly, homelike and unthreatening, light and airy, welcoming and nonclinical. Painted murals decorate the walls, the furniture calls out to kids, and there are lots of toys and books to busy both the little patients and their siblings. Two waiting rooms — one for sick kids and the other for well ones — mean no child will leave sicker than when they arrived. What McCarthy set out to do — and did — is inject her own warmth into all that medical rigmarole that the family suddenly needs to embrace.
She will continue to have a faculty appointment at NYU Medical Center and Bellevue Hospital Center and an adjunct appointment at New York Presbyterian Hospital, Cornell Medical Center and Lenox Hill Hospital.
“I want parents suddenly faced with problems to know there’s someone accessible to them at all times,” she says. “They will have my cell phone number to reach me at any hour.” Her goal is not only to provide topnotch medical care, but to be the point person coordinating all additional testing and care. Eventually, she’ll offer other services, such as nutrition counseling, and physical and occupational therapy, under her office roof. She will also take care of healthy siblings to make things easier for parents.
“My most important job will be to help these babies thrive and reach their best potential,” she continues. But sick babies impact a marriage, siblings, and the workings of the entire family, so she will address those needs as well. “For instance, mothers of sick kids often suffer from depression that goes untreated,” says McCarthy.
While she will refer family members for appropriate medical help, she believes that 90 percent of her job is reassurance. “For the most part, if parents are knowledgeable and kids are well taken care of, they thrive,” she contends.
Being a mother of two young girls, as well as a step-mother to a 17-year-old boy, has given her valuable insights, she says. “How would I want to hear information?” is a question she asks herself again and again.
And she answers: “I always want to be comforting and compassionate. I always want to give hope. What is gained by taking away hope? Nothing.”
“I want to be there to help shape these babies’ lives,” she says. “And what an honor that is.”