Caring for triplets with cerebral palsy
For parents out there, imagine that day when you returned home with your first child. If you’re anything like me, there was the visceral excitement of parenthood. But there also may have been a bit of nervous self-analysis about parenting. Perhaps too a twinge about money, as well as the new work, home life balance.
Now, imagine being the parent of not one baby, but three. Triplets. Suddenly, it all looks a little more daunting. And stretching the imagination even further, try to imagine that all three of the babies have serious disabilities.
That’s what happened to the Florence family in Toronto. W5 first met them in autumn of 2012. Dana used to be a teacher. Jared who at the time was her husband, was, and is an events planner. An average, young married couple who wanted a family. It took a while but in 2008 Dana became pregnant and they began planning their new lives. Then a few months into her pregnancy, she had a routine check, and received a bombshell. A nurse told the mother and father to be, to brace themselves. There was not one baby growing inside Dana, but three.
“I was shocked,” Dana told W5. “Shocked. Excited. Nervous. Scared. I was thinking, how are we going to manage this in every way.”
Jared’s reaction was even stronger. Initially, he had a fleeting thought that perhaps hospital staff were playing a joke. But it quickly sank in. “It was scary to me. I was just becoming accustomed that my wife was pregnant and I was going to be a dad.”
Then, the next shock came 25 weeks into Dana’s pregnancy. It was nearly four months before her due date and she went into labour. She gave birth to two boys and a girl, who were so small, they could each fit into the palm of their mother’s hand. The biggest of the three weighed just two pounds.
The three babies began their lives fighting for their lives. “We didn’t know if they were going to survive,” Dana told W5. “The best advice I got from the nurses in ICU (Intensive Care Unit) was to take things day by day, and sometimes hour by hour, because they were so sick.”
It was a frightening beginning, made worse when two of the babies needed heart surgery. One of them caused a code blue, meaning she stopped breathing and had to dragged back from death. It was, her mother says, horrific.
But six and a half months after their birth, all three babies were healthy enough to leave Toronto’s Hospital for Sick Children and go home. Dana and Jared named them Cole, Brody and Taylor. A family of five began a new life. There were financial worries, particularly after Dana had to quit her teaching job. There were the usual sleepless nights and exhaustion familiar to all new parents. But there were also the rewards as they watched their children grow and develop.
Then out of the blue, another, even more serious shock. The children were not developing like others their age. When they were two years old, their parents began to worry, so once again, consulted doctors. They were seeking reassurance, but instead got a diagnosis. Cerebral palsy. All three children.
The disorder is a neurological condition that in some cases, has a minor impact on motor skills, but among the more seriously affected, it can lead to a complete inability to walk, to speak, to use the bathroom without help. The disorder also can cause severe mental disabilities and early death. And while Cole, Brody and Taylor were and remain as bright and intellectually capable as others their own age, they are among the more seriously affected.
Dr. Darcy Fehlings at the Bloorview Research Institute in Toronto made the diagnosis. She told W5, “Cerebral palsy is our most common physical disability in childhood, and it’s secondary to a brain injury to the developing brain. So either when the baby is inside the mother’s womb or during the delivery, or in the neo-natal period, even up to two or three years afterwards, if you have an injury to the brain that affects the motor areas, then you can develop a permanent motor disorder.”
A key risk factor for cerebral palsy is premature birth. Clearly, the triplets’ early arrival will have lifelong consequences. And while raising a single disabled child can produce extraordinary challenges, multiply that by three and you get an idea of what the Florence family is facing. Perhaps they’re not alone in dealing with such challenges, but when Dr. Fehlings is asked whether she’d ever seen anything like this before, she answered simply, “No.”
The reality of what the Florence family was facing began to sink in. But with it, there was a sense that they would be able to deal with it. Their next challenge was Cole’s hearing. He was born deaf but doctors were confident they could give him hearing with a cochlear implant, which they performed when he was 3 years old. The implant is an electronic device. Once it is inserted beneath the skin behind the ear, it has to be activated with the flip of a switch. Literally.
Dana and Jared recorded the moment. Cole was sitting on his mother’s lap looking contented, oblivious to any sound. And then the doctor activated the device. Dana looked at her son and uttered the words that are the first sounds he’d ever heard. “Hi Cole, it’s Mommy.” There was a stunned look on his face. Then he burst into tears. Hardly surprising. His silent world all of a sudden had filled with sound. He would adjust quickly, learning to speak which he does now, almost constantly.
There were other rewards too, different from those experienced by the parents of able-bodied children. “We learned very early along not to take anything for granted,” Jared told W5. “When my daughter is able to hold onto my hand, that’s a huge deal. When Cole says ‘Hi daddy, what did you do today,’ that’s a massive deal. For Brody, who does not communicate verbally, when he smiles in order to tell you that he wants or doesn’t want something, that’s massive.”
It was not long after Cole received his cochlear implant that the parents had the idea of a gala for charity, to raise money for research into neurological conditions. Jared’s experience as an event planner came to good use. The gala was a success, and the idea grew. By 2012, the event had acquired all the glitter and glitz of a Las Vegas floorshow, with flashing lights, extravagant entertainment, and an auction of expensive and donated goods and trips.
“It was overwhelming,” Dana said. “People stepped up to the plate and we raised $465,000 the first year. We donated it to the Hospital for Sick Children for stem cell research and we funded four scientists. We were blown away and thought, we’re on to something here. Let’s expand this. We thought, maybe we start a charity.”
Which is what they did. It is called, Three to Be in honour of their children. The half million dollars they raised in the beginning has grown now into the millions. The money is used to help educate and inform parents who are struggling to deal with their children’s neurological diseases, and to fund research. In fact, seed funding from the Florence’s charity is partly responsible for an entire laboratory at Toronto’s Hospital for Sick Children. Hardly surprising, it is called The Three to Be Lab. Much work there is ground-breaking. The lab’s senior scientist told W5 her researchers may be on the edge of a breakthrough in the understanding of some neurological stem cells, a theory that’s now being tested in a clinical study.
There is no cure for cerebral palsy on the horizon. But the Florence family hopes the money that their charity raises eventually could lead to effective treatments. And they have compelling reasons to hope. Their children are confined to wheelchairs. They cannot walk or feed themselves. Their son Brody cannot communicate verbally. And while all three did well in a specialist school where they followed the same curriculum as able-bodied children their age, they have had to adjust to mainstream schools. And hovering always in the background is the possibility of severe health problems.
For example, Jared and Dana decided to give doctors the go-ahead for an operation to straighten Cole’s legs that eventually may allow for slightly improved and less painful mobility. The operation almost killed him.
“He was in the operating room I think it was 9 hours total,” Dana said. “But he came out of it. The first week was really scary. He actually stopped breathing and you know, 20 doctors were in the room trying to bring him back. That goes down as one of the scariest moments for sure with my children.”
Today, the once deaf Cole is the perennially smiling chatterbox of the family. The last time W5 visited the family, he was cracking jokes about being on television, making everyone around the table laugh. It was dinner time, a chaotic scene with Dana feeding the three children. The one person missing from the table was their father Jared. Among all the challenges that parents can face is pressure on their marriage.
“Jared and I separated about a year ago,” Dana said. “There’s a lot of stress that comes with being a special needs parent. And when you’re a special needs parent of three amazing children who have a lot of challenges, I think stress levels and the things you have to deal with on a daily basis are out of the ordinary.”
When asked whether any marriage can survive what she and Jared have faced over the past six years, she is adamant. “Absolutely. I see so many families going through similar things to us, and they do survive it. It depends on how strong you are as a unit, as husband and wife. We weren’t strong enough.”
The Three to Be charity continues to thrive. Dana has opened an office near her home and works there when not with her children. Jared lives nearby and he continues to play a large role in the lives of his children.
Cole, Taylor and Brody appear happy and well-adjusted. And even though the wheelchairs, ramps and the other aids for the disabled clutter their house, there’s much about the home, its atmosphere and its aspirations, that is exactly like any other.
“I’m scared of all the challenges that will come their way” Dana told W5. “It just never seems to stop. It kind of seems like every year, new things keep coming and coming and coming. But we’re surviving.”
And her hopes for her children? “I like to say, the sky’s the limit.”
Published Friday, October 16, 2015 12:40PM EDT