SUMMIT, NJ – Lisa McNamara still can’t talk much about Liam without choking up. But there’s one special room at Overlook Medical Center that speaks her heart for her.
Lisa and her husband, Peter, are residents of Westfield and the founders of Liam’s Room, a beautifully and peacefully decorated room at the hospital where a child can feel more at home than a typical hospital room. The room, number 680, is the room where Liam spent the last days of his short life.
Diagnosed at birth with a condition called Lissencephaly, or Miller-Dieker Syndrome, Liam’s life largely consisted of hospital stays. His brain did not develop properly and all the functions related to cognitive activity were profoundly delayed. Doctors told the McNamaras that Liam would never walk, talk, hold his head up, roll over, or reach for a toy. He would have chronic seizures, respiratory problems, feeding problems, gastrointestinal dysfunction, and repeated pneumonia. The average life span for someone with his condition is two years. Liam died eight months short of his second birthday. His twin brother, Nathaniel, was not born with the disease and is now a healthy, happy, six-year-old boy. His older brother, Trevor, is now 13.
Lisa remembers the blue-eyed, red-haired baby as “a little angel of hope who came into this world, made his mark, and left us all with a different love and perspective in our hearts.”
While the McNamaras were in it, Liam’s room had oatmeal-colored walls, flickering, fluorescent lights flickering, a pulse-oximeter blipping, and a metal crib. He died in Lisa’s arms as she sat in a hard wooden rocking chair. The austere, cold feeling of that room is one that Lisa and Peter wanted to spare other children, and their families.
“After Liam passed away, we decided to start a foundation in his memory to help children who are suffering from any chronic or life-limiting conditions,” Lisa said. “It’s bad enough being in the hospital, but to look around and be constantly reminded that you’re in the hospital is horrible.”
With money donated to the foundation, the McNamara’s set about making Room 680 look more like a child’s room and less like a hospital room. The simple, oatmeal-colored room is now looks more like a soothing beach retreat. The walls have beached-themed photos, and the ceiling tiles are decorated with seahorses and shells. One wall features a beautiful mural of a beach and a dock, and the seashore theme extends into the bathroom. There’s even a pull-out couch for parents who want to stay in the room overnight. It also has its own refrigerator, microwave, flat-screen television, Playstation with games, a desk with its own computer, and plenty of books.
The books, in fact, were a separate gift courtesy of a Scotch Plains Girl Scout troop, who held a book drive on Martin Luther King Jr. Day for Liam’s Room. The Scouts collected more than 200 new books and wrapped each one, complete with a get-well card. Now when a child stays in Liam’s Room, he or she gets a book to take home.
“It’s not just about the room, but the kind of care the whole family needs,” Lisa explained, adding that Liam received palliative care, which many people equate with hospice.
“But hospice is just a small portion of it,” she said. So the McNamaras added to their crusade more education for hospital staff on pediatric palliative care, providing funding for Overlook medical staff to attend a conference focused on such care. They even paid for some of the doctors to get a certificate in palliative care from Harvard University.
The room is for children anywhere from birth to the age of 18. The beach theme makes the room gender-neutral and suitable for any age. To date, more than 100 people have stayed in Liam’s Room, and many of them have left appreciative comments on the Liam’s Room website.
“It makes me so happy to be able to give this to other people,” Lisa said. “Liam was just an amazing baby. He just looked at you with these eyes … the bluest eyes you’ve ever seen. He was our little angel.”
For more information on Liam’s Room, including how to donate or get involved in the Fifth Annual Liam’s Room Mini-Olympics and Home Run Derby on April 22 in Westfield, visit www.LiamsRoom.org.