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Monday, May 24, 2010
Libby DeLana and Henry Fox remember the moment in the Neonatal Intensive Care Unit (NICU) at MassGeneral Hospital for Children when they watched a family enter the unit with an unhappy toddler in tow. “We remember looking at them and thinking there was nothing in the world we wanted more—we wanted a little, mad 2-year-old,” DeLana says. At that time DeLana had just given birth to her second son, Orren, who arrived about three months early, with a host of health problems.
Orren Fox as a baby in the Neonatal Intensive Care Unit at MassGeneral Hospital for Children
“We said hello to him and off he went to the NICU,” DeLana recalls. Eye problems, kidney problems, and sepsis— the body’s harmful response to an infection— were among Orren’s troubles, but the most difficulty came with his lungs. In the first 72 hours he was placed beside an extracorporeal membrane oxygenation (ECMO) machine, which serves as an artificial lung for patients with lung failure, just in case. When she saw her son in this state, just a few hours after his birth, DeLana reacted instinctively, bringing the baby to her chest, willing him to stay alive. “I literally sat there with him on my chest and the wonderful staff just hovering about. They really enabled me to stay and not even have to get up. I just told Orren about all the wonderful adventures our family was going to have and if he could stay that I guaranteed that he would have a blast,” DeLana says. Hours later, Orren stabilized. “We had the utmost respect for the physicians in the room,” DeLana says. “With the nurses, it was care for us and what our family needed. I’m sure we were a pain in the neck, because we were there all the time” she adds, but the staff didn’t seem to mind that the family was in the unit 20 of the 24 hours of the day.
To remember the care they received, DeLana and her family created The Orren Carrere Fox Award for Newborn Intensive Care Unit Caregivers. The annual award goes to a staff member who has been nominated by his/her peers for outstanding work.
From left to right: Award recipient Patricia Harron, RRT; Robert Kacmarek, RRT, Director of Respiratory Care; Libby DeLana, Orren Fox, and Henry Fox
“That experience and affection—that magnificent and terrifying experience as you stand on the edge of the abyss when your child is struggling—that really inspired us to think about the award,” DeLana says. DeLana laughs in surprise to discover that 13 years later, she no longer remembers the details of exactly how long her son was in the NICU—“Isn’t that amazing?” she says—but her family has made a point of remembering the experience each year through the award. “We wanted to create a touch point to go back and remember. The real impetus was the realization that it’s just such a collaborative team,” but that “perhaps some of the unseen, unheard staff didn’t get the same accolades as the doctors.” “Dr. [Jonathan] Cronin was part of the team, who was fantastic,” DeLana says, as was the rest of the team. “The impact on our life of the nurses by the bedside was enormous. We wanted to make sure that the respiratory therapists and nurses all knew that we were incredibly indebted to them,” she adds. This year’s ninth-annual Fox award went to Patricia (Patty) Harron, RRT, who has been a respiratory therapist at Mass General since 1983. Though she has practiced in all areas of the hospital, she found her passion in caring for the patients in the NICU. “I’ve been in the position before when my son was whisked away. I know how terrifying it is to have a child in the intensive care unit,” Harron said after accepting the award, speaking to the importance of involving the family in the care team. “I can’t say how unbelievable it is after 27 years to be a part of this,” she added.
About 400 babies come through the NICU at MGHfC each year, says Jonathan Cronin, MD, Unit Chief of Neonatology and Newborn Medicine. Every day the NICU team, which includes respiratory therapists, social workers and nurses, meets to plan their delivery of care. Families are also involved in this process. “It’s a total team sport,” Cronin says. The NICU has expanded since Orren Fox was treated, from 60 square feet to 150 square feet per basinet, but more than technological advances, Cronin says, “We’re just better at what we do with the technology we have and the medicine; understanding that the family plays a critical role.” At the Fox Award ceremony, Libby DeLana told the caregivers and family members in the NICU’s waiting area about her son’s trip to the ophthalmologist the day before. Orren was born with retinopathy, which occurs when abnormal blood vessels grow in the baby’s retina and can cause the retina to detach from the back of the eye. At the time, Orren received care from Anthony Fraioli, MD, to correct this condition. DeLana said that Orren’s current ophthalmologist told her, “Whoever took care of your son did a spectacular job because there’s no scar tissue.” With tears in his eyes, Orren’s father, Henry Fox, spoke to the room later: “Each year that we’ve come back it becomes increasingly clear how lucky we really were to have Orren in all of your care. There isn’t a day that goes by that we don’t think about all of you.”Read about Orren Fox today
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