It doesn’t seem real to Karen Serva.
The two hours spent traveling to Westchester County to visit her 3-year-old daughter, Caroline, who suffered severe brain damage after birth?
That was real.
The moments she, her husband and their three other daughters shared with Caroline, who requires a ventilator and constant medical attention, before the trips back home to Sound Beach? Those were real, too.
But the fact that Caroline will soon be coming home to a care center a few miles from their house?
“I can’t believe it’s right around the corner,” Ms. Serva told the News-Review. “We can’t wait, we’re so, so excited … It’ll be the greatest day of our lives, I think.”
They’re so anxious they know exactly how long the ride will be to visit her.
“Eighteen minutes,” Ms. Serva said, laughing. “My husband timed it.”
Ms. Serva and her husband, Rob, both long-time court clerks in Riverhead, brought their daughter back to Long Island yesterday to live at Angela’s House, a small nonprofit group home for children who need long-term medical care.
But for the Servas, who have spent the past two years advocating for more support for medically fragile children like Caroline, the fight to bring Long Island’s medically dependent children back home to their families isn’t over.
“We’ll do anything to stop another family from going through what we’ve gone through for the past three and a half years,” Ms. Serva said.
Meanwhile, their efforts appear to be paying off, as plans are in the works to address this void in local medical services.
In April 2010, Caroline was the one infant in a set of triplets born prematurely who suffered severe brain damage after birth. Caroline’s story — and the struggle of her family, who regularly spent hours driving to visit her at Blythedale Children’s Hospital — was first featured in a January 2012 special report in the News-Review.
The paper later investigated the lack of long-term pediatric care for children in need, revealing that dozens of families across Long Island have medically dependent children but can find practically no residential care centers nearby.
Nonprofit groups like Angela’s House have stepped in to fill the void, but in most cases, like the Servas and the family of Michael Hubbard — the Riverhead teen who was seriously injured in a gel candle explosion in 2011 — families are still forced to move their children into care centers in upstate New York, New Jersey or as far as Massachusetts, hours away from their homes.
Then-county Legislator Ed Romaine took up the cause soon after the News-Review series, and News 12 Long Island followed up with its own series bringing attention to the issue. That series was called “Too Far from Home.”
Thanks to the efforts of the Servas, who spoke on News 12 before the Legislature and pushed for a solution, and increased pressure from news reports, the Suffolk County Legislature established a task force that is now looking into ways to help children and young adults in need.
Caroline Serva will be one of eight children housed at the newest Angela’s House care center in Stony Brook, a long-term group home for children, Ms. Serva said.
“It’s the first home of its kind on Long Island to care for children with ventilators,” she said.
The family traveled to Blythedale Children’s Hospital on Wednesday and stayed overnight with Caroline before bringing her home.
“Everyday we’re all together will be a great day,” Ms. Serva said, adding that Caroline’s sisters — Emily, Bridget and Abigail — are looking forward to having their sister close to home.
“They’re very excited she’s coming home, they’ve seen her house,” Ms. Serva said. “They love Caroline and they treat her just like everyone else.”
Even though Caroline is near home, the family will keep its focus on helping others, Ms. Serva said.
An estimated 600 Long Island families have a child, or children, in need of round-the-clock medical attention.
And while some are fortunate enough to be able to provide such care at home, many others find themselves in the agonizing position of having to live far from loved ones receiving care at facilities elsewhere.
In Michael Hubbard’s case, the teenager was moved from Blythedale Children’s Hospital in June for a temporary stay at Peconic Bay Medical Center’s skilled nursing facility while he and his family await the completion of Brendan House, a long-term facility for non-elderly adults that’s slated to open on Sound Avenue in Riverhead. That facility will hold up to 12 people and provide round-the-clock care services.
Most recently, the Servas helped make a video to spread the word about two planned centers for long-term pediatric care — one at a Port Jefferson hospital and one at a West Islip nursing home — through Catholic Health Services, a group of hospitals, rehabilitation and nursing centers across Long Island.
The program in Port Jefferson will consist of a 10-bed acute care center at St. Charles Hospital to wean children off ventilators, said hospital CEO Jim O’Connor. The $1.5 million project will be the next step in care for children treated for emergencies at hospitals like Stony Brook University Medical Center, he said.
Stony Brook will provide medical staff to help treat the children at the St. Charles center, Mr. O’Connor said.
“They’re going to make sure we’re covered, which is huge,” he said. “We couldn’t do it without their medical support.”
About $850,000 for the project will be paid for by a state grant under the Health Care Efficiency and Affordability Law, Mr O’Connor said, noting that construction is underway and that the Department of Health will inspect the building in October.
If the 10-bed facility passes inspection, the hospital plans to open the program in early 2014, he said.
The other facility in West Islip, called the Children’s Care Pavilion will cover the next step of a child’s rehabilitation, hospital officials said.
The 22-bed home will be built into the Our Lady of Consolation Nursing Center using a 40-bed unit that’s currently vacant, said Joseph Tomaino, executive vice president of the continuing care division of Catholic Health Services.
“It’ll be like a nursing home within a nursing home,” he said.
The $7 million facility will have its own entrance, a special play area outside designed for the children and classrooms and activity areas for kids.
“Had this been in place when Caroline had her issues, instead of being all the way up at Blythedale, they could have been right here,” Mr. Tomaino said.
The home will be designed to take kids from programs like St. Charles’ 10-bed center and get them strong enough for home care, if possible.
“Maybe after another 18 months of growing and getting stronger we can get them back home,” he said. “And even if they need to come back here for a couple of weeks, we have that flexibility of putting them in the right place at the right time for what they need.”
The project will get about $2.4 million in funding from the state while the nursing home makes a fundraising push to raise the rest of the money for the facility, Mr. Tomaino said.
The Children’s Care Pavilion is in the “final phases of design” while officials work on getting state approval before moving further.
Since relatively few families are affected by the lack of long-term pediatric care, it is difficult to raise awareness of the problem, Mr. Tomaino said.
The private market has also failed to provide options for medically dependent children due to the cost, since such programs often lose money for the hospitals and medical centers that house them. Most all round-the-clock care facilities on Long Island are for the elderly.
“It’s not like cancer or heart disease where it affects thousands and thousands of people and it’s easy to get people [engaged],” Mr. Tomaino said. “For people to understand the problem, they really need to experience it.”
By sharing their story, the Servas have gotten the public interested in providing care for needy kids, Mr. Tomaino and Mr. O’Connor said.
“They’re really phenomenal,” Mr. O’Connor said of the family. “Their personal situation really hit them very hard and they feel very strongly that they want to advocate to bring resources to bear so other families don’t have to go through the same thing.”
Ms. Serva said the family was “pleasantly surprised” when, roughly three weeks ago, officials with Catholic Health Services approached them about helping, and they didn’t hesitate to embrace the idea.
“It’s another option for families and kids who need that extra care,” Ms. Serva said. “The goal is always to get the children home but in some cases it’s just very difficult. I think it’ll be great because it’ll keep the children and families intact, regardless of how long they need to be there.”