Fund-raiser will help family

By Debbie Gardner

PRIME Editor

Claudette Girard has lived every mother-to-be's nightmare.

At 23 weeks, she was told that there was something terribly wrong with the identical twins she was carrying.

Called twin-to-twin transfusion syndrome, it was a problem that, despite a very specialized surgery, left one of the two baby boys, Benjamin, with an incomplete brain, unable to see or walk.

The family was advised to consider putting Ben in an institution.

But Girard was undaunted. Against her doctor's advice, she gave up her law practice and brought Ben home. In that loving environment, with the help of her husband, Paul, and Ben's five siblings who range in age from 14 to Ben's 19-months-old twin Logan she's working to provide her disabled son with the best life she can.

Fund-raiser set for May 5

Until recently, Mass Health and other programs have made sure Ben receives most of the medical care and services he needs.

But they can't help the Girards now living on half the income they had before the babies came pay to widen their doorways so Ben's wheelchair can leave the kitchen.

Or remodel their bathroom to make it handicapped accessible. Or construct a much-needed ramp.

So on May 5, family and friends are hosting a fund-raiser for Ben at the Moose Lodge in Chicopee.

The hours are 6:30 p.m. to midnight. Tickets, which can be obtained by calling Girard at 267-3458 or Linda, 736-6675 (wynne92@aol.com), are $25 per person.

"At the fund-raiser we'll have a dinner served buffet-style chicken, pasta and salad and a DJ who has donated his services [to provide entertainment], Girard said. "We'll also have a raffle."

She listed Wings Over Springfield, Arby's, Panera Bread, Wilbraham Tire, Calamari's, the Texas Roadhouse, Interskate 91, the New England Air Museum, the Basketball hall of Fame amd the Crown Plaza in Enfield among the businesses who have donated prizes to the fund-raiser.

"We don't have a set amount we're [hoping for]," Girard said of the fund-raiser. "We don't believe one fund-raiser will take care of everything ... realistically we think that [the remodeling] will be a several-year process."

About Twin-to-Twin Syndrome

"Ben and Logan shared a placenta," Girard said, as she explained what happened to the babies in her womb.

At five weeks, she was told there was a five-to-15 percent chance that her babies would develop what is called twin-to-twin transfusion syndrome.

"What that actually means is that there is a disproportionate blood flow [between the two babies]," she said.

The syndrome appeared at 23 weeks, and Ben became the donor baby, feeding all of his nutrients to his twin brother, Logan.

Girard was told both babies could die without specialized surgery.

She and her husband flew to St. Joseph's Women's Hospital in Florida, where Dr. Rubin Quintero one of only two surgeons in the country who performs the delicate procedure called photocoagulation surgery of the placenta operated on Girard.

But, because of a pre-surgery complication a reduction in amniotic fluid caused her uterine wall to peel she had to wait a week before the procedure could be completed.

And, doctors now suspect, during that week's wait, Ben's starving brain was damaged.

Girard said when she left Florida to come home to Baystate Medical Center a trip she took by specialized air ambulance she had been told the problem was corrected

"[Dr. Quintero] personally came in to see me [and] gave me a hug and told me my babies [would] be fine," she said.

A month after the twins' premature birth she delivered at 30 weeks Girard said Ben experienced severe fluid retention and other problems that made doctors suspect there was some brain damage. At six weeks Ben underwent an MRI to determine what exactly was going on.

Shortly thereafter, Girard and her husband were told that Ben was missing part of several lobes in his brain.

They were told Ben would probably never walk, talk, see, hear, drink from a bottle or eat solid food.

So far, Girard said, the doctors were wrong about Ben drinking from a bottle, and the second opinion at Boston's Children's Hospital indicates her little boy may never walk, but he may be able to eat solids, and communicate in some fashion.

Still, Girard finds herself thinking about what might have been.

"When you're pregnant with twins, you have the vision that you're going to have two little boys on the swings ... holding hands ... then reality slaps you in the face that that's not going to happen," she said.

Donations to help defray the family's remodeling expenses can also be made to the Benjamin Girard Benefit Account at any TD BankNorth.