Brave Hearts

Life is tough and dangerous. This is the fact that every adult knows and that every parent keeps secret from their kids for as long as possible. But when the hard lessons come too soon there are places to find hope and courage.

Becky Orton checks on her son Joseph, 10, who was born prematurely and has required numerous trips to DHMC for pediatric intensive care services. Photo by Matthew Lomanno

In a perfect world, there would be no disease or heartache, especially where kids are concerned. But as Becky Orton knows, our world is far from perfect. Orton’s son, Benjamin, passed away at the age of 8 after a lifelong health struggle. Upon his birth in 2002, he was immediately whisked away to the intensive care unit, Orton says, and had intermittent stays there the rest of his life.

Following Benjamin’s death, Orton, who lives in Gilford with her husband Steve, decided to become a foster mother to medically fragile children. Her family now includes two other children who have made multiple trips to the pediatric intensive care unit. She has adopted Joseph, who was born severely premature and is now 10; and she is hoping to adopt current foster child Jane [not her real name], a toddler who, at six months old, was in intensive care for 45 days. “There were a couple of days there when I didn’t know if she was going to make it,” Orton says. “It was a pretty awful experience but … she pulled through.”

Medical providers who specialize in certain segments of pediatric care are surrounded by families like the Ortons every day. They must not only do what they can to medically help the young patients who come to them in need of life-saving care, but also must recognize the complex interplay of the physical and the emotional in a setting where some families will experience unfathomable pain and sorrow.

Kristen R. Johnson. Photo by Matthew Lomanno

Many New Hampshire hospitals make it a point to provide emotional support in addition to medical care, and some even hire specialized staff such as “child-life” personnel to help children and families cope with difficult times. The aim is to provide play, some normalcy and education in the hospital setting, says Kristen R. Johnson, BS, CCLS, child-life specialist at the pediatric intensive care unit at the Children’s Hospital at Dartmouth-Hitchcock (CHaD). “We encourage normal development and that sense of fun and being a kid,” Johnson says, “in spite of challenging circumstances.”

Child-life specialists at CHaD offer intensive-care patients opportunities for therapeutic interaction. If a child loves books, for example, staff members try to provide books for the parents to read out loud at the child’s bedside, enabling parent and child alike to enjoy a familiar and comforting activity. A hospitalized child might also be invited to perform medical interventions in make-believe fashion on a stuffed animal. In addition to being a fun distraction, Johnson says, this type of play provides insight into the child’s thoughts about medical treatments. Children who are afraid of, say, being stuck with a needle or set up with an IV are taught coping strategies so that going forward, such procedures — which, for some of these kids, will become a regular occurrence — will not create undue trepidation and anxiety.

Care providers attend to family members of hospitalized children, as well. They prepare brothers and sisters of pediatric intensive-care patients for the changes they might see in their hospitalized brother or sister, particularly post-surgery or following a trauma. And especially in instances when the patient’s prognosis is unknown or worrisome, family members might be encouraged to create mementos with the hospitalized child by inking family handprints on canvas, making thumbprint jewelry, or taking family photos. “This not only provides a memento for the family to take,” Johnson says, “it reminds them of the time they spent with the child creating the memento.”

Amy D. Roy, MD. Photo by Matthew Lomanno

Care providers try to help pediatric patients “understand in a developmentally appropriate way what’s happening,” says Amy D. Roy, MD, director of the pediatric emergency department at Elliot Hospital. Roy routinely works with youngsters who come to the emergency room with a broken arm, sprained ankle, or other non-serious condition, but she sees critical cases too: patients whose circumstances reflect the urban and rural blend of the greater Manchester area — with plenty of skiing and snowmobiling injuries, but also wounds that result from car accidents, along with occasional gunshot and stabbing injuries. Staff members try to reassure the children, sometimes in ways that might not be obvious. For example, pediatric emergency patients might be allowed to choose whether their hospital ID is placed on their left or right wrist. Simple? Yes, but “it gives children an important sense of control” Roy says, in a situation in which they might feel deeply afraid, powerless, and unsure of what’s to come.

Hospitals find that soothing young patients creates a spillover effect. “[It helps parents] when they see their children being supported and cared for in a sensitive and loving but fun way,” Roy says. “Being pediatric specialists, we recognize the importance of seeing families as units,” she says, “so we really try to adopt a family-centered approach, even in the emergency department.”

More cold, hard reality

As if having a child whose health is in jeopardy isn’t distressing enough, families of critically ill or injured hospitalized children face an additional difficulty: the practical and financial challenges of the situation, which can be significant. Expenses related to hotel stays for parents who want to be near their child during his or her hospital stay, the cost of meals, and lost income due to missed work add up quickly. Independent of medical bills, “for the average family, within the first three to six months of care, the cost is somewhere between $5,000 and $10,000 above what their family expenses would normally be,” says Jack van Hoff, MD, section chief of pediatric hematology and oncology at CHaD and associate professor of pediatrics at Dartmouth.

Dr. Roy checks vitals on Mark Kimball in the Elliot Hospital Pediatric Emergency Department. Photo by Matthew Lomanno

Recent Boston-based research on the financial hardships faced by families whose children had been diagnosed with cancer reported that one-quarter of the families lost a staggering 40 percent of their income during that first six-month period. Families lost their homes, faced the loss or threatened loss of utilities, and experienced food shortages, van Hoff says. Being thrust into such dire financial circumstances, compounded with the anxiety related to the child’s health and difficult oncology treatments, places “huge” stress on the family, van Hoff says. “The needs on a family are tremendous when something like this hits.” Some local hospitals try to provide financial help for families, he says, but “there’s a limited amount that we can do.”

Meanwhile, patients and their families are not the only ones who need to deal with the stress and emotional fallout that can accompany a critical- or serious-care scenario. The psychological toll can also weigh heavily on doctors, nurses, and other hospital staff. Pediatric care providers say they find support through a variety of sources, including each other. “I think all of us do many things [to keep our spirits up],” van Hoff says. Providers rely on the love and friendship they receive from their own families, faith groups, and even running clubs. Additionally, van Hoff says, “I think you have to consciously think about how to broaden your life so that your entire day is not consumed by your job.”

During his years of caring for pediatric cancer patients, van Hoff says he has drawn great strength particularly from his coworkers. “What is extremely important to be able to do the job is to feel that you are part of a team, and that [the job] is a burden you share,” he says. If as a care provider you feared, for example, that other team members might criticize decisions you made about a child who is dying of cancer, “it would be unbearable. If you work together as a team and support one another as we absolutely do, you bear that burden with other people and it makes it feasible,” van Hoff says. The therapeutic relationship among team members is essential to each person’s well being. Each team member understands “what things are like,” van Hoff says, and “is willing to call the family and talk with them when times are really tough.”

Dr. Jack van Hoff in pediatric intensive care unit at DHMC. Photo by Matthew Lomanno

For van Hoff, those really tough times can include seeing children who are not fully supported by their families. “It’s a tragedy” when any child dies of cancer, he says, but it helps to know that many of the pediatric cancer patients have the love and support of their families and communities to the end. In contrast, he says, “the hardest thing is when the families have dysfunctions that prevent them from giving the level of care that you would like the child to have.”

This is where substance abuse, among other problems, creeps in. “We don’t see a lot of it,” van Hoff says, “but we do see some because that is real life in New Hampshire right now.” Mental illness can also contribute to parents’ inability to adequately cope. When parents fail to take care of themselves and get the help they need, it creates a situation that is “very difficult,” van Hoff says. “You see things where you know that this family is not able to support this child the way that other families could,” but at the same time, this is the family that the child has and loves, and the child “doesn’t belong anywhere else.”

Elliot Hospital pediatric emergency physician Amy Roy echoes that sentiment. One of the most challenging aspects of her work, she says, is caring for children who are abused or neglected, which has become a more common occurrence with the burgeoning heroin epidemic. “That,” she says, “can be very, very hard.”

At Elliot, particularly difficult pediatric emergency cases are followed by a “debrief” session for employees that gives staff members a chance to get together and talk about how things went and to share any concerns they might have moving forward. Pediatric emergency care providers can also attend drop-in workshops that provide tips for handling the stress and anxiety that workers might feel.

Care that is attuned to the multidimensional needs of everyone involved with a seriously ill or injured child can make even the most heartrending times at least a little easier. Despite Becky Orton’s repeated trips to the pediatric intensive-care unit, being there with a child who has a life-threatening condition is still “always frightening,” she says. Working with staff members who acknowledge and care for emotional as well as physical health helps, though. Once, during a particularly difficult intensive-care stay with Jane, who was an infant at the time, Orton returned to Jane’s room from a quick break to find a nurse holding and comforting Jane. “It made me feel good because they’re not just treating [children] as patients, but they genuinely care for them,” Orton says. “They do such a great job besides the physical, to take care of not just the child but the family. That’s been my experience.” 

Soothing pediatric pre-operative nerves

If you’re a kid, being in the hospital for any procedure, be it chemotherapy or a tonsillectomy, can be scary. To assuage children’s fears, some Granite State hospitals offer programs and services to pint-sized patients and their families who are in the hospital for surgery.

At Exeter Hospital, kids and their parents can tour the hospital’s pediatric unit and go through a kind of dry run prior to the day of surgery. Children get a chance to try on a johnny (while remaining clothed), bounce — OK, or at least sit — on a hospital bed, view the OR, and meet nurses and staff. Teddy bears stand at the ready to model common procedures such as heartbeat and blood pressure checks. Perhaps not surprisingly, parents sometimes benefit from the pre-op sessions as much as the children. “They often want to see what’s going to happen too,” says Michelle Savoie, MSN, RN, Director of the Family Center at Exeter Hospital. “Their anxiety can be just as high as the child’s.”

Pre- and post-surgery, staff members provide kids with toys, movies and other happy distractions, and parents can stay overnight in their child’s room. Parents can even order guest food trays  from room service so that they can have meals in the room with their child. But for easing stress and possible cabin fever, nothing beats the perennially popular plastic wagon ride through the pediatric unit, Savoie says, offered mostly to children who are recovering from surgery.

Care for children in the pediatric unit “is all very individualized and depends on what the child needs and wants at the time,” Savoie says, “but usually it’s just lots of love, lots of caring, and lots of patience and support and understanding — and it really goes a long way.”

Cailin O’Toole entertains herself with a Rubik’s Cube. Photo by Matthew Lomanno

The Pediatric ICU

One Patient’s Perspective

This past February, Cailin O’Toole, 10, was headed north on I-91 with her family from New York for a few days of skiing when the O’Toole’s Ford Expedition hit a patch of slush, fishtailed out of control and crashed in a tree-lined gully. Cailin suffered the most serious injuries among her family and was taken by ambulance to the Children’s Hospital at Dartmouth-Hitchcock, where she was admitted to the pediatric ICU with several fractured vertebrae, two broken ribs and lacerations on her liver and kidney.

Hospital staff members, Cailin and her parents say, immediately set to work, helping her heal inside and out. “They gave me medicine, and they told me things that made me feel more safe,” Cailin says.

Cailin’s mom, Heather, was quick to praise the hospital caregivers for the positive spirit and encouragement they showered upon her daughter. The first day Cailin was physically able to get up and walk after being admitted to the hospital, Heather says, staff members looked on and cheered.

Cailin will need to wear a back brace for two or three months, but she is expected to fully recover. A few days shy of her birthday, she had healed enough to be discharged and hospital staff prepared her for the journey back to Long Island. The nearly 11-year-old looked forward to seeing extended family members, who planned to gather for what would undoubtedly be a very special birthday celebration.