Specially designed rooms, combined with pediatric palliative care programs, have helped hundreds of families through their children’s toughest times
Children who are seriously ill or facing end-of-life care decisions spend long periods of time in the hospital, and their families require new routines while their loved one is away from home. Liam’s Room, a not-for-profit organization dedicated to providing pediatric palliative care resources and support for families of young patients who spend great lengths of time in the hospital, provides a “home away from home” for these families.
In 2019, Overlook Medical Center in Summit, NJ, will celebrate the 10th anniversary of the opening of its Liam’s Room, the first of its kind in the state, and Goryeb Children’s Hospital in Morristown, NJ, celebrated its five-year anniversary in 2018.
The rooms memorialize the life of Liam Hayden McNamara, who died at age 16 months, and were inspired by the experiences of his parents, former Westfield residents Lisa and Peter McNamara, as they sought care for their child at a time when pediatric palliative care was not often discussed.
In an effort to enhance comfort and create access to these services, they founded Liam’s Room Inc., which designs and funds custom-designed, inpatient pediatric hospital rooms that provide a more welcoming environment for the entire family and include the amenities of home. They include sleep sofas, recliners, refrigerators, homework spaces, full-length closets, in-room video games, family eating spaces, and help create a homelike atmosphere that eases the difficulties of a child’s prolonged hospital stay and promote family-centered care.
In addition to the rooms, Liam’s Room is committed to pediatric palliative care through education and provider training. In 2017, the organization funded registration and accommodations for nurses from Goryeb Children’s Hospital and Overlook Medical Center at the Pediatric Palliative Care Coalition’s Third Annual State Conference. The organization also made accommodations for Goryeb Children’s Hospital’s Sheryl Vassallo, MD, a pediatric hospice and palliative care physician, and Toah Alafita, DO, director of pediatric intensive care, to attend a palliative care clinical education course at Harvard University.
“In partnership with Liam’s Room Inc., Atlantic Health System is changing the experience for families with seriously or chronically ill children in hospitals,” says Walter D. Rosenfeld, MD, chair of pediatrics, Atlantic Health System. “We are providing the comforts of home, or making it easier for families to stay together and provide true family-centered care, which is healing in and of itself.”
“Trying to balance our family life with caring for Liam and spending so much time in and out of the hospital, we knew there needed to be a more supportive system, and an improved, family-centered environment when in the hospital,” says Lisa McNamara, Liam’s mother and co-founder of Liam’s Room Inc. “We wanted to create a space where a family could shut the door and feel as though they might be at home in their child’s bedroom, while also receiving the support and care that their family and their child needs – that is the heart of what pediatric palliative care is all about. It is about improving the quality of life of both the child and the family.”
Following the success of the Liam’s Room at Overlook Medical Center, Liam’s Room Inc. opened a nautical “deep sea”-themed room at Goryeb Children’s Hospital, which has been almost full since it opened. Children facing end of life are given priority use of the room. But it has also been used by young patients who are undergoing care for chronic conditions like cancer, inflammatory bowel disease and neurologic disorders.