Patient Stories
Pediatric Intensive Care: Being there when your child needs you the most
Just as children are different from adults, so does a Pediatric Intensive Care Unit (PICU) differ from an adult ICU. Beyond the physical and developmental issues involved in treating seriously ill children ranging in age from early infancy to late adolescence, perhaps the most significant difference is that children are dependent on their families—and that families at CHaD are considered as much a part of the treatment plan as the patients themselves.
"Here, we really practice family-centered care," says Matthew Choate, PICU's unit leader. While the average length of stay is only about three days, some children require weeks and even months of constant and expert attention. In these situations, the PICU at CHaD not only accommodates parents who want to remain with their children for the duration, but makes them feel welcome.
"When CHaD says they treat the entire family, they mean it," says Kevin McCullogh of Danbury, NH. "My wife and I moved in and never moved out." The McCulloghs' 14-year-old son Beniah was skateboarding home from his regular jaunt down the road to the post office to pick up the family mail when he collided with an oncoming truck going 40 mph and catapulted down a bank, slamming into a tree stump. His injuries were massive; he was not expected to survive.
Transported to DHMC in Lebanon, NH via DHART helicopter, Beniah remained in a coma for eight days. Kevin and his wife Theresa slept in his room, one on the padded window seat and the other on a roll-in cot. Friends and extended family conducted nightly vigils. It was almost a month before Beniah responded to his parents, signing "I love you" with gestures he had learned before the accident.
By then, the McCulloghs had virtually set up housekeeping in the PICU. It was like living in a college dormitory, says Kevin. "Beniah's room was huge, almost apartment-sized. They let us use the kitchen and made us feel like it was our home." Over time, Kevin and Theresa were allowed to play an increasing role in their son's care, helping to move him while he was in traction, attending to his personal hygiene, and controlling his feeding pump.
After six weeks Beniah was deemed ready for less intensive care. The McCulloghs decided to rehabilitate him at home, so the PICU staff provided the intensive training they needed to undertake this responsibility. A year later, Beniah is walking, talking, and even skateboarding again. He has some residual problems with vision, range of motion, and short-term memory, but he continues to improve. The McCulloghs visit the PICU regularly just to keep in touch. "Our time there was incredible," says Kevin. "I wish every hospital experience could be like that."
Becky and Jim Forrestall of Henniker, NH stayed at the PICU even longer than the McCulloghs did—almost three months in all—while their 5-year-old son Avery was treated for a series of complications stemming from his treatment for leukemia. Like Beniah, Avery hovered between life and death on several occasions. "They dealt with us very respectfully," says Becky. "I can't express the amount of compassion and caring they gave to our family."
When Avery survived those first days, the Forrestalls, like the McCulloghs, moved in semi-permanently. "The PICU was our home for the three months they allowed us to be there," says Becky. While she and her husband appreciated the facilities (and were grateful when the staff encouraged them to take off for dinner in the cafeteria or a shower at David's House), what mattered most was the way they were treated.
"Avery's situation wasn't typical so they didn't always have answers, but they were consulting with experts all over the country, and sometimes they'd just sit with us and we'd not have the answers together, " says Becky. "I felt they really cared about us as a family, not just as a case study." Avery's treatment at the PICU succeeded. Now, says Becky, "we're just dealing with the cancer—something I never thought I'd be grateful for."
CHaD's PICU admits over 500 children each year. Many bear chronic illnesses requiring multiple visits; others suffer from serious neurological impairment and may never recover completely. But of those who enter without preexisting conditions, the vast majority will recover and enjoy their original health or close to it, says pediatric critical care specialist Michele Vander Heyden, MD, the PICU's medical director. And part of that healing is certainly thanks to the fierce dedication of their families, whose inclusion and close involvement is respected—and even encouraged—by PICU staff.
