"We took him out of his crib. We just kept taking turns holding him. You could see that he was slipping away."

Peter McNamara continued...

"While we were holding him, his breathing was getting easier. He seemed to be much more comfortable. He became more and more peaceful."

"The two of us just sat with him… and watched him go."

It was a snowy day, March 9, 2007, the day Peter and his wife, Lisa, lost their 16-month-old son, Liam, to a chronic brain disorder called Lissencephaly (Miller-Dieker Syndrome). Liam was a twin to his brother Nathanial.

Two years later, May 15, 2009, this Westfield couple turned their grief into a grand endeavor. They dedicated "Liam's Room" in his honor, just down the hall from where he died at Overlook Hospital in Summit.

And while the room comes complete with all the comforts of home for a sick child, adolescent or adult, it is "really the physical representation of the other pieces of our mission… which is to provide Pediatric Palliative Care and educate staff on how to implement what that really means," said Lisa. Palliative Care is treatment to relieve symptoms, rather than to cure.

"There are two separate things," said Peter. "It's a tribute to Liam and his legacy. The message is we never want to forget that he was here. He was here for a very short time and had such a huge impact on us."

"The other is that families go through struggles like we went through. They need help, they need support, they need a network around them that often is just assumed that they have. We know that that's not necessarily always the case. We want to do our part to help them and give that to them."

The McNamaras said much of their son's short life was spent shuttling between doctors' visits, and the lack of communication and coordination between offices made it much more difficult emotionally and physically.

"We just assumed that things would just fall into place… that the coordination would just be there," said Peter, adding "at different points, that didn't happen."

"You kind of just assume that that all just works and the reality is it just doesn't."

"Peter and I are just fortunate that we're educated," added Lisa. "We're going to advocate for our child. We're going to uncover everything and anything to help him. Not everybody has the time."

Peter added that lack of time, resources or education "shouldn't prevent a child from getting what they need."

And Liam's needs began November 10, 2005, the day he was born.  

"We didn't know exactly what was the matter," said Lisa. "The doctor thought something was potentially strange (in utero), but he said we won't know until after he's born what's really going on."

Liam stayed in the Neonatal Intensive-Care Unit (NICU) for eight days with still no diagnosis. "He had a dimple at the bottom of his spinal cord, which they thought was indicative of a whole laundry list of different syndromes," said Lisa. "He had some facial features that they thought were indicative of something. He had some initial feeding issues that were abnormal to a healthy baby. He had some trouble breathing."

"The term they used was 'failure to thrive'" she said, adding specialists "scratched their head and said 'he definitely has a syndrome but we don't know what it is.'"

"The first four months were extremely difficult because Lisa and I both knew something was wrong. Lisa really had that maternal instinct. She was convinced that something was really wrong," said Peter.

"We finally got connected with this amazing pediatric neurologist… [who] finally determined a diagnosis," he added. "I remember both of us just completely falling apart."

Peter said about one in 250,000 kids are diagnosed with Lissencephaly (Miller-Dieker Syndrome.

"As your brain grows, the ridges and bumps of your brain allow your brain to communicate with the rest of your body," explained Peter. "When your brain is smooth (like Liam's)… none of that develops."

The doctor told Peter and Lisa most children with Miller-Dieker Syndrome live until two, and very few past age five or six or into their teens."We knew at that point what we were faced with," said Peter.

The couple has an older son, Trevor (then seven) and Liam's twin, Nathanial, who was born healthy.

"It made everything 'bitter sweet,'" said Peter. "We had two beautiful babies. It should've been a time for absolute joy and celebration. At the same time we got this absolutely crushing news and immediately had to fall into the mode of what do we do next."

"Everything was focused on how to care for Liam."

He continued, "If you know Lisa… she's a woman who 'takes the bull by the horns.' She was immediately in action trying to figure out what to do next for him and for us."

And while both agree there was "relief" in knowing Liam's diagnosis, the struggle continued.

Lisa likened her life, then, to a game of pinball. "We were bouncing from here to there. We'd go to one doctor and he'd say you need to go here."

She said she knew she had to do something when she realized none of the doctors she saw so frequently communicated with each other. Her role became "nurse" before mommy.

And while Nathanial did have a baby nurse for five weeks, they brought him to appointments when she wasn't there, and tried to "provide as much of a normal experience for Trevor" as possible… all while caring for Liam.

"Even if we had two healthy twins, that in and of itself is unbelievably exhausting. We were at a doctor probably three times a week," said Lisa.  

Lisa and Peter said their goal with their foundation, Liam's Room, Inc, is to make an experience as difficult as theirs more manageable for other families.

"Part of what our foundation is hoping to achieve is trying to provide pediatric palliative care," said Lisa. "Real pediatric palliative care ties all of those puzzle pieces together (for the families)… so it's not so time consuming."

She said they want hospitals to further educate their staff in this area and put coordinators in place who can help families manage all of their appointments.

Lisa said when she and her husband of 15 years knew things were taking a "turn for the worst," they talked about doing something to help others.

They asked for donations at Liam's funeral, but did not decide what to do with them until "the dust kind of settled." They set up a trust and then established their foundation.

"If you could say there was one gaping hole, where would it be? It would be juggling our family and Liam's care and being in and out of the hospital. That's what palliative care encapsulates."

Lisa said after nine months, Liam was in and out of the hospital every other week.

Peter said upon Liam's diagnosis, their neurologist "laid out exactly what was going to happen" right down to the time frames. "That almost played out to the day and time what occurred."

"We always kind of knew what we had."

Hospital stays gradually became longer and longer. Lisa and Peter would take turns sleeping over, coming home, taking Trevor to school, caring for Nathanial, etc.

"We wanted a room… where the entire family could be together… in an environment where they could be comfortable," said Peter. "A place for the family."

"Whenever Liam was admitted to the hospital, we always asked for the same room (across from the nurse's station)" said Lisa. "Room 680."

"Whenever I went home I knew that someone was looking out for him."

"The last time he was admitted to the hospital we said 'we want our room.' We started calling it 'Liam's Room.' They said 'you can't have it, someone's in it."  Lisa said that's when she knew "this is it."

"The room was nowhere near the nurse's station and was very isolated. He was in that room for four days before he died."

Lisa said after their son died, they knew that they had a bigger purpose. "I feel like we were chosen by him not only to take care of him but to do what we're doing."

"Every once in a while you'd get this unbelievable connection with him in his eyes… and you could see he was telling us something," said Peter. "You just knew he was communicating back to us that he would be OK. That he loved us. And that he was here for a reason and that we would have to figure that out."

"The hardest thing was the day we had to tell Trevor," he recalled.

Lisa agreed. "When Trevor came into the room… you could just see something in him totally change. He'd follow him with his eyes. He and Trevor had a very special bond."

"He's a very sensitive young man, so he was devastated."

Peter said it wasn't until it was over that they knew exactly what their purpose was. "When it all finally happened, that's what I think we were left with. 'OK. Now it's our job to unwind all of this.' That's when we came to the conclusion over time."

Lisa "threw" herself into the foundation pretty quickly. Three months after Liam died, the couple gave a PowerPoint presentation to Overlook Hospital, outlining their plans for "Liam's Room" and pediatric palliative care.

 "We knew we had to work pretty quickly for it to happen," said Peter. "It basically took a year and a half to raise the funds, build up the plans, really understand what we were doing,"

The room, which includes a computer, flat screen TV, video games, cozy furniture, wall murals, an updated bathroom and other amenities, cost triple what it was supposed to, about $150,000 according to Lisa. The hospital hired an architect to work with her on its design.

Families who use the room "should sit on real furniture and feel like they're at home," said Lisa. "Everything in the room is a reminder of the beach,"  from the bathroom mural painted by her neighbor to the walls. "Everything reminds you of not being in the hospital."

She said the room turned out "even better" than expected.

Dr. Walter Rosenfeld, chairman of Pediatrics for Goryeb Children's Center at Overlook and Goryeb Children's Hospital at Morristown Memorial Hospital, said his staff has witnessed first hand the "tremendous comfort for many families who have needed to be admitted there."

"The whole idea of the room was to make it really a home away from home so that when a child was admitted to the hospital and had palliative care needs, they could be admitted to this room with a sense of calm, support and overall nurturing," he said. "We really try and make that happen for children all the time. But this room adds a special note."

"We also committed to training our staff further in palliative care methods."

He said he and his staff created a pediatric palliative care committee that spans both hospitals, in Morristown and Summit. The committee includes doctors, nurses, child life professionals, social workers, etc., from all disciplines.

"It's very easy to be overly focused on a cure at times when it's also appropriate to focus on comfort. Learning and understanding more about what palliative care means is a very valuable experience."

Dr. Rosenfeld said this concept ties in with another aspect of his hospitals' care called "Patient and Family-Centered Care."

"When you include patients and families into decisions… with guided efforts… you end up having the best outcomes and fewer errors. It provides better care."

He said while palliative care used to be more adult-focused, "it has become a very important focus for pediatrics, adolescents and young adults as well."

Dr. Rosenfeld said "it's important for not only dying children and adolescents and adults, but for people who have chronic illnesses where there's a tremendous amount of pain and suffering."

He added it's important for health systems "to do things that will help make that person's life and their family's life more tolerable and pleasant," especially when a cure hasn't  come.

"The McNamaras are very special people. They took this very tragic event in their life and have turned it around to try to make it so much better for other families and children," said Dr. Rosenfeld.  

He added, "One of the really nice things that happened was the very first family that stayed in Liam's room thought that it would be appropriate to have a journal in the room. They went out and bought one. Many families have since put notes in that journal. They've expressed beautiful things… thanking the McNamaras, nursing staff and doctors for the living care that they've been given."

Lisa said she was fortunate to meet one family who stayed in Liam's Room. "We were looking at each other with tears in our eyes and didn't have anything to say. It was an unspoken gratitude."

Peter said "the agreement we have with the hospital is that they'll reserve it for patients with serious conditions unless the pediatric unit is full."

Families from as far as Hawaii, Germany and the Netherlands have all stayed in Liam's Room. And she said she hopes her cause will continue to grow and benefit more and more families. 

So far, the foundation has raised about $325,000 through grants and private donations and the support continues to come. 

"The entire community of Westfield has just been so unbelievably supportive," said Lisa. "It's almost like this is their project. I don't even know how to describe how wonderful everybody has been."

Each year an event is sponsored for the foundation. "We've had two silent auctions, three sporting events and last year the Junior Women's Club of Westfield" sponsored a silent auction for the foundation. Their last fundraiser, in April, was a Mini-Olympic event and home-run derby.

"We'll always remember him and have (our boys) remember him," said Peter. "It's always going to be extremely difficult. It's something you would never wish on anyone."

"We'll go back to the term 'bittersweet,'" he said. "And as time goes on, it doesn't become easier, but we all find a little more joy each day in seeing this through and remember it's because of who we lost."

Said Lisa, "of course we would trade it all for just another day with Liam."

For more information, or to donate to Liam's Room, Inc. go to www.liamsroom.org.