Sunday, April 22, 2007

A Son's Death Inspires a Mission

Barton Silverman/The New York Times
Jill and Craig Levine, of Merrick, N.Y., with their children Samantha, 2; Rylie, 6 months; and Joshua, 8.
The couple’s oldest child, Robbie, died in 2005, at age 9, during a baseball practice.

Webmaster's note: Dr. Craig Levine saved a women's life with an AED just 4 days after this article was published. Read about the save by clicking here.

By Michael Winerip

Merrick, NY - HOW do you survive a child’s death?

On Sept. 27, 2005, at Little League practice, Robbie Levine was running the bases during a relay race. As he rounded first, his dad, Craig, the coach, remembers thinking his son had never run so fast. Robbie was a fine little athlete, that blessed 9-year-old who could catch a grounder and make the throw to first, a smart, focused boy you could put at shortstop to hold your infield together.

The father had turned to watch the next base runner and so didn’t notice the commotion right away. Robbie had reached home plate and collapsed.

“I thought he fainted,” his dad says. “I remember shaking him. He was kind of writhing. I said, ‘What’s the matter?’ He wouldn’t wake up. It started to click. I checked for a pulse, felt his arm and neck. I kept saying, ‘God, this can’t be happening.’ ”

Craig Levine is an oral surgeon and had just been recertified in CPR. “I gave him two breaths,” he says. “Then I started CPR.” He says Robbie breathed twice. “I realized later they were his agonal breaths. You learn about it in dental school, but until you see it. ...”

A police officer arrived about five minutes later with a defibrillator. “We put it on his chest,” the father says. “It said, ‘Deliver shock.’ ”

Robbie did not revive.

The ambulance came, and Dr. Levine went along.

His wife, Jill, was at home, with their younger son, Josh, running a Cub Scout meeting, when a neighbor came over. “She told me Robbie collapsed,” Ms. Levine recalls. “I figured he fainted.”

Friends stayed with Josh, then 6, and his 6-month-old sister, Samantha. Josh told everyone Robbie was just dehydrated.

“On the way,” Ms. Levine says, “I kept asking, ‘Is it going to be O.K.?’ My friend said, ‘It’s really bad.’ ”

Ms. Levine saw her husband waiting in the hospital parking lot.

“I don’t think he’s going to be O.K.,” he told his wife. “His heart stopped. I think he died.”

Today, Dr. Levine says, “I knew he was dead, as soon as we got into the ambulance. I knew on the ball field he wasn’t going to wake up. And then you sit in that room and they tell you, ‘We tried everything.’ ”

Ms. Levine says, “I just started screaming.”

Robbie Levine was pronounced dead about 8 p.m. By 10 his parents were home.

“I don’t think we slept for a few days, just looking at the ceiling wondering how,” Dr. Levine says. Besides grief, there was anger. Could Robbie have been saved if there had been a defibrillator at the field, immediately available?

This would become his parents’ cause. “It became my main focus, my coping mechanism,” says Ms. Levine, who was a social worker before staying home with the kids.

They wanted Robbie buried beside his grandfather and were told there was no room in the plot. They found themselves demanding in ways they never had before. “I kept saying, ‘He can’t be by himself,’ ” Ms. Levine says. The cemetery relented.

“People ask, ‘How do you get up in the morning?’ ” Ms. Levine says. “I had a 6-month-old daughter. I had no choice. We needed to live our life, be the normal family we are. You don’t want Josh growing up saying, ‘When I was 6, we were so screwed up, we never did anything.’ ”

They saw a grief counselor. “I went for two sessions and cried my eyes out,” Dr. Levine says. “She told me what I’m feeling is normal. So why did I need to go?”

They have consulted several medical experts about what caused Robbie’s heart failure, but 18 months later they still don’t know. It’s more than just a need to understand. Could it be genetic? Could it affect their other children? Sudden cardiac death is extremely rare: According to the American Academy of Family Physicians, it kills 1 in 200,000 young athletes a year.

Robbie’s death was particularly puzzling. Three months earlier, he’d complained of dizziness at a baseball practice, and the Levines had taken him to a pediatric cardiologist. Robbie was given an electrocardiogram and, at the mother’s insistence, an echocardiogram.

“They acted like I was this crazy mother,” she says. “The doctor said: ‘He has the healthiest heart I’ve ever seen. I never want to see him back.’ ”

Robbie’s episode of dizziness and his heart failure came when he was physically active. The Levines wondered if a stress test would have detected a problem. Between Robbie’s visit to the cardiologist and his death, he was constantly playing sports. Had there been other times he had felt dizzy and did not say so? “You tell a 9-year-old not to worry,” his father says. “Maybe he felt it and figured, ‘The doctor says I’m fine.’ ”

They have thought of suing, but have taken no action while they try to find answers.

They’ve sent the 27-page autopsy report to a pediatric cardiologist and a pediatric pathologist. Those experts did not pinpoint a cause and recommended other experts.

Robbie’s brother seemed perfectly healthy, but as a precaution, the Levines took him to a new cardiologist. “We said, ‘Treat Josh as if he was Robbie,’ ” Ms. Levine recalls. The 6-year-old had an EKG, an echocardiogram and a stress test and wore a heart monitor for 24 hours. All the results were fine.

And all the while, the Levines have worked at getting back to normal. Two weeks before Robbie died they had bought a new kitchen table at Macy’s. “At the store, we sat around the table to see if five chairs would fit,” Dr. Levine says.

They felt it might be a mistake not to fill that fifth chair again.

Six months ago, a second daughter, Rylie, was born.

A million things make them remember Robbie. “You see a couple with three kids, you wonder if they lost a kid, too,” Dr. Levine says. “I see a patient who’s 9, I think, ‘That’s how old Robbie was.’ I see one who’s 11, I think, ‘That’s how old he’d be.’ ”

Josh is now 8. His parents believe he is doing fine. “He doesn’t have behavior issues, he does well in school, he’s a happy child,” Ms. Levine says.

Around Josh, they try not to dwell on Robbie, but mention him when it seems right. His dad coaches Josh’s Rookie League team. “I’ll say, ‘Do you think Robbie would have loved this game?’ ” Dr. Levine says. “And Josh says: ‘I was thinking about him a lot today.’ He knows he’s missing.”

On April 29, in Merrick, the Levines will hold their second 5K race to raise money for the Robbie Levine Foundation. Last year they raised $35,000. Because of the foundation, there are now defibrillators at all 10 Little League fields in Merrick, stored in sheds along with the bases and ice packs. Every coach takes a three-hour training course in defibrillator use. The foundation has also made a DVD about Robbie in hopes that youth programs elsewhere will do what Merrick has done.

While public health experts I interviewed say the $1,500 each defibrillator costs might be better spent for vaccinations against diseases that kill more children, like meningitis or influenza, the Levines say if one of their defibrillators saves one child, that would be sufficient.

“If it’s your child,” Ms. Levine says, “it’s your whole world.”

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