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Hernando Today

Patching Up A Small Heart

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By TONY HOLT

Published: February 23, 2008

SPRING HILL - SPRING HILL - Emily Merkle had her share of symptoms.

The 9-month-old girl was slipping behind her peers on all the growth charts. She would sweat often and would grunt whenever she crawled across the floor.

Her pediatrician noticed her motor skills had not fully developed and encouraged her parents to see a neurologist.

Emily had full brain activity, but before Darin and Amy Merkle could let out a sigh of relief, the brain specialist discovered something abnormal elsewhere. The baby had a heart murmur. It was the first sign of a congenital heart defect.

"It had always been there," said mother Amy Merkle. "It just went undetected all this time."

Emily is now a happy, healthy baby. During a visit to her parents' home last week, she had little trouble entertaining herself. She ran up to a stranger who was sitting on her parents' living room sofa and gazed at him, usually with a wide smile on her face.

Her pigtails bounced up and down each time she picked up her little feet and shuffled across the hardwood floor.

Until a cardiologist confirmed Emily's heart ailment, the girl's parents had no idea their baby girl was flirting with death every day.

"It felt like the whole world froze," Merkle said. "(The cardiologist) told us right away she needed surgery."

It would not happen right away. Darin and Amy Merkle had to wait two months before the surgeon could see their daughter. Emily had a Gortex patch placed over the hole in her heart. She still has regular checkups, but she is expected to live a long, healthy life.

Emily suffered from an ostium primum atrial septal defect with a cleft in her mitral valve, according to her mother.

In short, she was diagnosed with one of many variations of CHD. Statistically, it is the number one birth defect and the number one killer among babies.

The March of Dimes stated one out of every 125 babies is born with CHD. The Children's Heart Foundation claims 40,000 CHD infants are born each year. Ten percent of those will not live beyond their first birthday. Twice as many children reportedly die from heart defects than all forms of pediatric cancers combined.

Researchers are not sure one way or another whether CHD is genetic. The key is early detection. The earlier the diagnosis, the better the odds of survival.

"They younger they are, the faster the recovery," said Darin Merkle, 31, who admittedly was nervous about having his 1-year-old daughter go under the knife. "They work on hearts the size of walnuts."

Merkle hopes more tests can be integrated during the post-birth process at the hospital. Every baby goes through a variety of tests and scans, adding a 10- or 15-minute test to check for CHD should become a regular practice, he said.

"That's something that could be done early along with an eye test or a hearing test," he said. "You can survive without being able to see or hear, but you're not going to survive without a heart."

Today, Emily rarely sweats and never grunts. Her motor skills are normal and she is now growing at the normal rate for a girl who is 22 months old.

"She's very intelligent for her age," Merkle said. "Her problem-solving skills are high. She's very technical, analytical. She takes after me."

Emily learned how to open the child-safety locks in the kitchen when she was 16 months old. They are designed to work for children as old as 3.

The young couple have become deeply involved in CHD-related causes. The two of them approached the owner of the Beef O' Brady's restaurant on Forest Oaks and asked if he would be interested in sponsoring a fundraiser.

Every last Wednesday of the month, 10 percent of all bills collected at the restaurant after 5 p.m. will be donated to Mended Little Hearts, a support program for parents with children suffering from heart defects. All a customer has to do is mention the group's name to the server.

Amy Merkle, 25, who is a part-time surgical technician, said the emotional toll was nearly too much for her to bear. She and her husband are not looking to add to the family any time soon, maybe never.

"We were going on with life for a year and a half and we had this bomb dropped on us," Darin Merkle said. "It was a trying time."

For more information on Mended Little Hearts, visit www.mendedhearts.org.

Reporter Tony Holt can be reached at 352-544-5283 or wholt@hernandotoday.com.

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