SAN LEANDRO -- From her belly button and beaming blue eyes to her 10 fingers and 10 toes, Ruthie Lou Lands looked perfect when she was born Aug. 9, 2011.
Her parents' bliss, however, crumbled seconds after the seamless labor and delivery, when they discovered Ruthie Lou wasn't breathing on her own. Doctors soon discovered she had a chromosomal abnormality that meant she needed life support to survive, and she likely would not survive long.
"I wanted to jump out the fourth-story window of the room we were in," Amie Lands said. "There was nothing more in the world we wanted than to take our daughter home, but it didn't seem possible for us."
Amie and Chris Lands found solace when hospital nurses told them about George Mark Children's House, a center where they could get emotional support they needed -- and specialized care for their daughter as she lived out her short life.
When it opened in the San Leandro foothills in 2004, George Mark was the first free-standing facility in the nation to offer palliative and hospice care to terminally ill children. Today, it remains one of the few examples in this country of an approach to children's care that is more common in Europe.
The 15,000-square-foot house was named for the two brothers of one of its founders, both of whom died young. It was built for $15 million with donations and loans, and it sits on land leased from Alameda County for $1 a year.
George Mark provides transitional and end-of-life care mostly for children from birth to age 21, who usually stay from one day to several months. Of eight beds, four to five are occupied daily.
"Often, children diagnosed with terminal illnesses die in the hospital," said Kathy Hull, an adjunct staff member at UCSF Benioff Children's Hospital Oakland and the center's co-founder, along with Barbara Beach, director of pediatric oncology at Children's Hospital Oakland.
"Our thought was if these kids aren't going to survive, why not get them out of the hospital and into palliative care? Give them comfort and quality of life."
A place for the family to gather
George Mark feels like a vacation home or a sunny bed-and-breakfast inn, with gardens, computer room, a dining area with on-site chef, and play and water therapy areas. Staffers provide counseling, therapy, pain management, and social and medical services to families.
There are no restrictions on visiting hours or the number of family members who can visit. The parents of one child threw him an 18th birthday party with more than 40 people.
Families also can bring pets, and parents can spend the night with their children in jungle-, princess- or pirate-themed rooms with hidden compartments to hide IVs, wires and oxygen tanks.
"It doesn't have to look and feel like a hospital," said Ken Sommers, George Mark's director of advancement.
Like Ruthie Lou's parents, families are referred to George Mark primarily through Bay Area children's hospitals and agencies for people with disabilities. Its approach to caring for dying children is relatively new in the United States, where there are countless such treatment centers for adults and the elderly.¿
Sommers points to the critical need for respite care, where parents can leave children for short periods of time, in addition to transitional care as children near death.
"For some of these parents, care is a 24-hour job," said George Mark CEO Lucy Weiger. "They don't get a mental break."
Fifteen-year-old Charlie Cleberg and his parents, Joe and Kathy, have been visiting George Mark about four times a year since it opened. The Pinole teen doesn't need end-of-life care yet, but he needs constant care. Charlie was born with congenital defects, including a curved spinal cord, that impair muscle movement in his face, upper body and arms; he also has epilepsy and cerebral palsy.
When the Clebergs adopted him at birth, they were told he likely wouldn't live past six months.
"He's almost died so many times" when he stopped breathing, said Kathy Cleberg said, who has had to give her son mouth-to-mouth resuscitation.
Before their first visit to George Mark in 2004, Charlie's parents had never been away from him.
"We were so nervous leaving him, we spent the night in a hotel in Oakland," his mom said.
At the center, the Clebergs bond with families who "understand each other in a way that no one else could possibly understand ... to have a child that isn't going to live to adulthood," Kathy Cleberg said.
Charlie also connects with other kids, kicking a ball and playing video games.
"I love George Mark because of the volunteers, and I always feel safe there," he said.
That feeling of safety freed his parents to take their first official vacation since they adopted him -- a 10-day cruise to Alaska -- a year after they found George Mark.
"We have time to recoup and come back to him stronger," Kathy Cleberg said.
"If I was to wake up in the morning and find Charlie died in the night, I would bundle him up, take him there and I would know they would help me through what I needed to do over the next few days," she said, breaking into tears. "There is peace in knowing that is available."
Since it opened, George Mark has admitted more than 1,108 patients, mostly from the Bay Area, but also from all over California.
Insurance covers about 22 percent of the center's $4 million annual operating budget. The rest is covered through partnerships, donations, grants or through fundraising.
But relying on donations means it's sometimes tough to stay afloat. When the recession hit in 2007, money dried up and the facility laid off staff. In 2010, it closed for six months.
Partnerships with Hospice by the Bay and Washington Hospital have helped cut costs; fundraisers by such organizations as the San Leandro Police Department, Salesforce.com and Kiwanis International are critical to keep the center open.
Almost three years after her daughter died, Amie Lands still goes to George Mark for counseling.
Ruthie Lou was 21 days old when she was removed from life support. She lived for 12 days until she died Sept. 10, 2011.
About a year later, Lands gave birth to a healthy baby boy named Reid. The day the couple brought him home, they pulled out a set of Ruthie Lou's handprints, made at George Mark.
"That was very special to be able to feel like she was there with us, even though she was not," Lands said. "There's nothing more that I would want for a family with a dire or fatal prognosis than to have the gift of George Mark. They saved us."
Contact Natalie Neysa Alund at 510-293-2469. Follow her at Twitter.com/nataliealund.
George Mark Children's Home opened in San Leandro in 2004 to serve terminally ill children. Its operating budget is just over $4 million a year. Insurance payments cover 22 percent of that; 40 percent comes from individual giving; 27 percent from grants, community campaigns and small businesses and organizations; 11 percent from fundraising events.
Patients served: 105
Family members served: 250
Staff: 11 full-time and 38 part-time
Patients from the Bay Area: 83 percent
Patients from the rest of California: 17 percent
Number of children admitted since opening: 1,108
Ages of children they serve: 5 percent are younger than 1 year old; 14 percent are 1-3 years old; 18 percent are 4-8 years old; 20 percent are 9-12 years old; 19 percent are 13-17 years old; 15 percent are 18-21 years old; 9 percent are 22 or older.
To learn more about George Mark Children's House or donate, call 510-346-4624 or go to www.georgemark.org. To learn more about Ruthie Lou Lands or donate to help parents who have lost a child, go to www.ruthieloufoundation.org.