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Special Parents

April 01, 1989|JAN HOFMANN | Jan Hofmann is a regular contributor to Orange County Life.

Even before their baby was born, Gary and Linda Andrews of Santa Ana could clearly picture what he would be like.

The child--Gary's first, Linda's third--would be a boy, of course. Gary, already a Little League coach, would teach him to pitch and hit and catch with the best of them.

And for Gary, he would be something extra--the beginning of a legacy. Gary is adopted, and he has never known any of his blood relatives. "I'm the first me," Gary says. "He was going to be the second me, and then he would have children. . . ."

At the hospital Dec. 3, 1986, Gary watched while the obstetrical staff prepared Linda for a Cesarean section because the baby was in the breech position.

After the doctor made the incisions and pulled out the baby--yes, it was a boy--"I was expecting some cheering or clapping from the staff," Gary says. "But there was silence."

The umbilical cord was wrapped around the baby's neck, but he was "pink and cute and crying. So I was relieved at that point. When the doctor finished cutting the cord and cleaning fluids from him, I noticed a red splotch on his back. The silence was dreadful.

"I didn't want to mention anything for fear of upsetting Linda," Gary says. "When they started to move him out of the room and quickly down the hall in his little Isolette, past the nursery and into the neonatal intensive care unit, I knew something was tremendously wrong."

Soon afterward, the doctor told the Andrewses that their son had spina bifida, a defect that occurs in about one to two of every 1,000 births. The infant's spinal cord and the bones surrounding it were not fully formed, and that red splotch Gary had noticed was the exposed spinal cord itself. Although doctors operated immediately to close the opening in the baby's back and repair what they could, much of the damage was permanent.

When Family Life asked parents of disabled children to share their experiences, the Andrewses and others wrote to tell about their frustrations--and how they deal with them--as well as their hopes and how they had been forced to revise them.

Whether their children are afflicted with spina bifida, Down's syndrome or other forms of retardation, cerebral palsy, blindness or other problems, these parents all have some things in common.

Although some of their friends and neighbors consider them unfortunate martyrs or brave heroes, they insist that they're just ordinary people who have been thrust into extraordinary situations. And the experience has forced them to re-evaluate their goals, their priorities and their beliefs.

Little Jeffrey Andrews is 2 years old now, and soon he will be getting his first wheelchair. He can crawl, though he has no feeling in his lower body. Sometimes his feet get stuck in awkward positions and "he'll yell 'Feet! Feet!' so we'll help him move them," his father says.

Gary, meanwhile, has long since quit coaching baseball. "I don't even play anymore," he says.

He and Linda love their son, of course, but they still mourn the loss of the child they had envisioned. And the grandchildren too. Although about 60% of men with spina bifida are able to have children of their own, "the odds of him fathering a child are zilch," Gary says.

"We've talked about having more children; we've even gone through genetic counseling," he says. "But we have so much responsibility already."

In addition to holding down jobs--Gary, 40, is an engineer and Linda, 33, is a nurse--the Andrewses take Jeffrey to therapy 5 days a week. They must catheterize him three times a day to empty his bladder "or his kidneys will fill with urine and he could have renal failure," Gary explains.

Like many spina bifida victims, Jeffrey has hydrocephalus, and shunts were installed soon after he was born to drain excess fluid from his brain. If a shunt fails to drain, the fluid buildup could cause irreversible brain damage.

"Every minor thing could turn out to be something major," Linda says. "If he throws up, is it a shunt failure? He fell off the bed the other day, and I had to look at his legs to make sure they weren't dislocated. That can happen very easily." Since he was born, Jeffrey has had three back surgeries, meningitis and a resulting grand mal seizure, and five shunt revisions.

"Sometimes when I'm driving, I wish I could just keep driving and not come back," Linda says. "You do feel trapped sometimes."

Linda goes to a therapist regularly for help in dealing with the frustration. Gary takes a different approach. "I play golf once a week." he says. "I go out and hit the ball and walk. And think."

They also attend spina bifida and hydrocephalus support groups. "It helps just to be around people who know how we feel," Gary says.

"You have to take another look at all the myths you've learned in the past," Linda says, such as the assumption that bad things won't happen to good people.

"People say, 'Oh, God chose you for this.' And you want to say, 'Why does it have to be me?' "

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