Story originated on Sunday, October 19, 2003
By Paula Evans Neuman, The News-Herald

Happy homecoming

Family thankful to be back Downriver

Photo by E.L. Conley 
Kenneth Clair (left), 13, Beth Clair-Cassar, Rob Cassar and Kendra Clair, 12, are thrilled to have Robbie Clair-Cassar, 21 months, home with them in Woodhaven. The baby was born three months premature and spent the first 11 months of his life in hospitals. 

WOODHAVEN -- It's been almost a year since 21-month-old Robbie Clair-Cassar came home.

He still has a host of medical problems, but the boy -- all 28 inches and 20 pounds of him -- is holding his own.

Born three months premature at 1 pound, 3 ounces, Robbie spent the first 11 months of his life in hospitals.

His parents, Rob Cassar and Beth Clair-Cassar, were told at least 10 times to prepare for their tiny child's death.

But Robbie's will to live proved stronger than anyone could imagine.

"He has a very strong will and attitude," Beth said. "He's so stubborn. It's funny. They're still scratching their heads over how he made it."

She has learned a host of medical knowledge since Robbie was born unexpectedly in Florida during a family vacation.

She has learned how wonderful people can be.

And she has learned a profound respect for her two other children, Kenneth and Kendra Clair, ages 13 and 12.

The family was stranded in Florida when Robbie was born, dependent on machines to breathe and eat.

Beth and the two older children stayed in Florida for eight months to be with him, while Rob returned to Michigan to work and pay the bills.

Kenneth and Kendra went to school in Florida, even after Kendra broke her leg.

Beth developed close friendships with some of the staff of Tampa General Hospital's neonatal intensive care unit, and still keeps in contact with them.

"They became our life," she said. "We had nobody else out there."

She suffered many dark times as her baby struggled to survive, including when her truck was broken into while the family was at dinner one evening.

"They took everything -- the children's scooters, their clothes," she said.

The most devastating losses of all were a videotape of Robbie, and Beth's journal, which she had kept since the day of his birth, chronicling his ordeal.

"That was the lowest point," she said.

She told her friends at the hospital about the theft.

"It wasn't 20 minutes later when a nurse at the NICU called and said, 'We're going Dumpster diving.'"

The search for her videotape and journal turned up nothing, but Beth was heartened by the help.

"The next day was our anniversary," she said. "We came in (to the NICU) and they had a cake for us and cards, balloons and gifts, including a gift certificate for the kids so they could buy new scooters.

"I just cried. We were just blessed."

Then there was a time Robbie was failing fast.

"They told us, 'There's nothing you can do. Just let him go. He'll probably be gone by the end of the evening,'" Beth said.

Someone mentioned a treatment of nitric oxide, used sometimes to treat life-threatening pulmonary vascular disease in premature infants.

But the treatment is only used at 32 weeks, and Robbie was only at 24, Beth said.

A doctor broke the rules and treated Robbie with nitric oxide anyway. For two days, he clung to life without showing improvement. But then he rallied slowly.

"No others so young survived," Beth said. "They thought he'd have brain damage or hearing loss or be blind, and he has none of that. He wears glasses. Well, sometimes he wears glasses."

She laughed. Robbie's stubbornness continues, and he doesn't tolerate his glasses -- or crowds -- very well, she said.

"God works in mysterious ways," Beth said. "Maybe there's a reason he was born in Florida. Maybe he wouldn't have made it anywhere else.

"Maybe the doctor wouldn't have broken the rule and tried the nitric oxide."

On Aug. 20, 2002, after four operations, Robbie was transferred to the University of Michigan Medical Center in Ann Arbor, and a few months later, he was allowed to go home.

He is still on a ventilator. He has a tracheotomy tube and a feeding tube, and seldom tolerates food by mouth.

"After 11 months of tube feeding, he has an oral aversion," Beth said. "Anything approaching his mouth, he just isn't comfortable with. My daughter is the only one who can get him to take some."

Kendra and Kenneth help their baby brother with other things, too.

"I don't know what I'd do without them," Beth said.

The children -- against the advice of the medical professionals -- took days of training at U of M along with their parents to care for Robbie and the equipment he still relies on.

"They learned a lot faster than I ever expected," Beth said. "I didn't want to leave them out. They said they've never had children their ages learn so much and be so interested.

"They have learned so much because of their love for him. They both want to be respiratory therapists now. They can give him his meds through the (feeding) tube, and help me with the trach (tube) change."

At the Ann Arbor hospital, Kendra and Kenneth proved to be invaluable volunteers with other sick children, as well.

"I was so proud of them," Beth said.

And both older children have stayed involved with volunteer work.

"Now they just love doing anything they can for the community," Beth said. "Their father was killed when they were 1 and 2. It was really hard. And yet they turned out so loving and caring."

Robbie is beginning to do exciting things, too.

He goes off the ventilator, breathing on his own, two or three times a day. He is starting to crawl, and can pull himself up to stand.

"He really wants to get on the move now," Beth said. "And by spring, he should be off the vent completely."

Robbie has trouble gaining weight, and may need more surgery. He still needs a lot of medication and a lot of care.

But Beth remembers a time when she couldn't conceive of Robbie ever leaving the hospital.

"I never imagined we'd be home," she said.

She has learned hope.

And she has learned the power of a tiny boy's will to survive.