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Strong heart: 6-year-old lives with rare defect

Photo by Kristen Ralph

Photo by Kristen Ralph

COVINGTON -- Amanda McKenzie has watched her son Conner endure six open heart surgeries and face many life-threatening moments. At just 6 years old, little Conner has suffered more than most do in a lifetime. But he's also stronger, smarter and more spiritually attuned than most adults.

Conner was born with a rare heart defect called Hypoplastic Left Heart Syndrome, meaning he lives with only the left half of his heart.

McKenzie learned of her son's condition when she was 20 weeks pregnant. Doctors urged her to terminate, but she couldn't find peace with that decision.

"How do you do that? You've seen your baby, you've felt it kick. I said, 'I'm sorry, that's not something I could do.'"

Conner had his first open heart surgery at just two days old, and two more before he turned 1. The fourth open heart surgery took place when he was 28 months old and one week later, he had a pacemaker installed. He also had to have his gallbladder removed several months after that. His most recent surgery took place Oct. 15.

Doctors don't know what caused his abnormality. The repair is usually a three-stage process, but after his second surgery, Conner began having problems with his aortic valve. He underwent an experimental procedure to install a mechanical aortic valve that calcified after just five years -- the devices usually last 10 to 15. The latest surgery was to install a replacement valve. He's on numerous medications, including the blood thinner Cumadin.

"He can't go to school. It's dangerous because the other kids are bigger. If they were to push him down, if he were to bump his head, he could have internal bleeding," McKenzie said. Instead, a certified teacher comes to Conner's home several hours a week.

Conner has been beating the odds since birth. Doctors thought he wouldn't survive his first surgery, as he weighed only 4 pounds, 6 ounces. But he showed them. His strength is apparent in all sorts of ways, as is his wisdom, that at times seems to go beyond human understanding.

"He's almost like an old soul. He's really deep. He understands a lot more than the average 6-year-old," McKenzie said.

After doctors told McKenzie she had stopped ovulating and was possibly pre-menopausal, Conner laid on his mother's stomach and asked if she had a baby in her belly. "I said, 'Why would you ask me that?' and he said, 'Because I think you have a baby in your tummy.' A pregnancy test confirmed it. The gynecologist was astounded when she performed an ultrasound. It was so early in the pregnancy that she could only see the sac. Conner also informed his mother that the child she was carrying would be a girl, which also proved true.

As McKenzie packed for a recent hospital visit, Conner let her know she was overdoing it.

"He said, 'I don't know why you're packing all that junk. I'm only going to be there four days." I didn't figure he had any concept of time," said McKenzie, noting that Conner typically stays at least two weeks and sometimes as many as eight. "Do you know that child was there four days?"

Sometimes Conner's heart beats as rapidly as 180 beats a minute. That happened one day on a trip to Toys "R" Us. Though turning pale, he was grinning from ear to ear when he informed his mother.

"I said, 'Why are you smiling like that?' He said, 'Because I don't want you to worry,'" McKenzie said.

Conner tries to protect his mom as best he can, often letting her know he's not feeling well by starting out with, "Mom I don't want you to freak out, but..."

Sometimes, though, his fear is obvious. "He's asked, 'What happens if I don't make it and go to heaven?' That's a really hard question to answer," McKenzie said.

He also knows how to astonish adults. One day waiting in the checkout line at Kroger, he noticed a man wearing a white lab coat. Recognizing the man as a doctor, Conner said to him, "I have a pacemaker."

"I don't think so," the doctor replied. "Maybe your granddaddy has one."

Conner pulled up his shirt to show his scar and triumphantly said, "I have Hypoplastic Left Heart Syndrome and I have a pacemaker and a mechanical valve." He was 3 at the time.

He also once told a nurse, "If you don't mind, I would like a copy of my own X-rays so I can review them myself." She gave them to him.

McKenzie worried her son would be intellectually delayed, but that hasn't been the case. He is behind on development of some motor skills, such as cutting, because she won't let him use scissors, due to the blood thinner. He also didn't walk until age 3, instead scooting around on his bottom. Doctors couldn't explain that, but Conner apparently was just waiting until he was ready. One day he pronounced, "I'm going to walk, mommy," and he's been walking, and doing lots of running, ever since.

"I'm not saying it's not challenging and it's not scary," McKenzie said. "He's been through a lot. But there is hope. I want to take Conner to the man who told me to terminate my pregnancy and say, 'Look at this.'"

This Thanksgiving, McKenzie said she was more grateful than ever for her blessings.

"Before I had him, I was rushing through life not being thankful, taking a lot of things for granted," she said. "Now I can stop and be thankful even when he's climbing the walls and spilling stuff on the carpet."

Conner has his own P.O. Box, and he loves to get cards from well-wishers. Greetings can be sent to Conner McKenzie, PO Box 276, Oxford, GA 30054. To keep up with Conner, visit his care page at www.carepages.com. His care page is called CuteConner. Visitors must register and remember their registration name and password to revisit.