Saturday, July 04, 2009

First Father's Day shadowed by son's condition

Greg and Laurel Beth Lamendola had a pleasant Mother’s Day. They went out to brunch with his parents and made light-hearted conversation. So they will try to have an equally pleasant Father’s Day today.Not that it won’t be difficult. After trying for three years to have children, and suffering three miscarriages, Laurel Beth finally gave birth to the couple’s first children in September: a pair of fraternal twin boys, Drew and Parker.

Unfortunately, in March, Parker began having seizures. He has since been diagnosed with “infantile spasms,” a potentially fatal form of epilepsy that causes brain damage in most of its survivors.

So the couple, as they did on Laurel Beth’s first Mother’s Day, finds themselves wearing brave smiles on Greg’s first Father’s Day.

“Father’s Day represents the joy of our two boys,” Greg said. “It will also bring some sadness because we’re not all healthy here.”

Greg, 35, and Laurel Beth, 40, are Tallahassee natives. They began dating seven years ago and have been married four years. Greg, a soccer star at Maclay School and University of North Carolina-Wilmington, is a physician’s assistant. Laurel Beth, a Leon High grad, spent 17 years as a dental hygienist before becoming a stay-at-home mother.

The couple wanted to publicize their story in hopes of helping other parents. After Parker began having seizures, it took more than a month for doctors to diagnose his condition. Local physicians diagnosed Parker’s seizures as a continuation of a form of acid reflux both twins had as newborns and predicted they would go away on their own. Doctors at Shands Hospital in Gainesville seconded that diagnosis -- until the Lamendolas “begged” for more intensive tests that revealed Parker’s condition.

“In our hearts, we knew (the condition was more serious),” Greg said. “We wanted to encourage other parents, who feel something is not right with their child, to keep pursuing an answer.”

Statistically, infantile spasms occurs once in every 3,500 births and five out of every 100 babies born with the condition die by age 5. Among survivors, 90 percent suffer “some degree of intellectual impairment,” and about a third incur behavioral difficulties, such as autism, said physician David Dunn.

“Unfortunately, it’s one of the most serious forms of epilepsy,” said Dunn, a professor of children’s neurology at Indiana University and a member of the national Epilepsy Foundation Professional Advisory Board. “Some of the kids go on to normal lives. But the majority will always struggle with schoolwork and continue to have problems with seizures.”

The condition is not uncommon in twins, as multiple births increase the risk for many conditions, or with older mothers, such as Laurel Beth, who had a difficult pregnancy. Impregnated through in-vitro fertilization, Laurel Beth spent eight weeks on bed rest in Tallahassee Memorial Hospital before giving birth to her sons, who spent two weeks in the TMH neo-natal unit with acid reflux.

But the cause of infantile spasms, which are a result of organic malfunctions in the brain, are still unknown.

“It’s absolutely nothing the parent has done during pregnancy or since the child was born,” Dunn said. “It’s frightening. Parents are expecting good healthy babies and then there are problems.”

Parker began having seizures when he was six months old. Since his condition was diagnosed by Shands’ Dr. Paul Carney, a pediatric neurologist, Parker has been treated with steroids and three kinds of drugs. The drugs have lessened the severity of the seizures -- he has 15 to 20 a day -- but cause an irritability that leads to his constantly moaning when awake. His cries are heart-wrenching to his parents.

“I haven’t seen him smile since this nightmare started,” Greg said. “We saw his ‘fun’ personality before this started. Now, it’s all hidden.”

Understandably, Parker’s condition has “turned our world upside down,” said Laurel Beth. Once an active couple who exercised together and went out with friends, the couple is “now secluded,” she said.

Their parents, Edward and Patricia Lamendola, Thomas and Grace Lawhorn and Laurel Beth’s mother, Nancy Dell Lawhorn, have been invaluable supporters. One or more parents visit almost daily to help with the boys. Nancy Dell Lawhorn, a former Tallahassee Chamber of Commerce executive who now lives in Atlanta, has spent weeks at the couple’s home. She encourages everyone she meets to pray for her daughter, son-in-law and grandson.

“It’s been awful (for Greg and Laurel Beth). Their emotions fluctuate up and down,” said Lawhorn, who sleeps in the room with Parker to attend to his near-hourly wake-ups. “At their age, it’s hard to have faith and trust that things will get any better.”

The help from parents has allowed the couple to spend time with healthy twin Drew, “giving him the attention he needs,” said Laurel Beth. The situation also has brought the couple closer.

Greg is the worrier; Laurel Beth is the cheerleader. Greg goes online nightly to look for more information; Laurel Beth eschews further bad news and concentrates on taking care of her sons and husband.

“I’ve seen strengths I didn’t know my wife had,” Greg said. “Her compassion, her caring, her encouragement.”

Laurel Beth does daily physical therapy with Parker. The couple networks with other parents of children with infantile spasms. They make twice-monthly visits to Shands for tests and consultations: In September, Parker will undergo an MRI of his brain on his first birthday that will provide important indications of his condition’s future.

And while today is not exactly the cheerful Father’s Day he might have imagined, Greg tries to stay upbeat.

“This has tested our faith; we hope eventually we’ll see some light,” he said. “But it’s brought out the love and support of family. It’s connected us in ways we would not have been connected.”


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