Bonnie Bolden

bbolden@thenewsstar.com

Marin Varnado is 9 years old and on her third pacemaker.

According to the American Heart Association, eight of every 1,000 babies born will have a congenital heart defect, meaning the heart or surrounding blood vessels didn't grow properly before birth. More than 1.3 million Americans have a CHD, and about 40,000 children a year are born with one. Causes can be environmental or genetic, and CHDs can have a broad range of effects ranging from small holes to whole segments of the heart being undeveloped. At least 18 different defects exist with variations. Some require surgical treatment while others might only require monitoring.

Severe defects are usually found within a few months of birth. Signs include the child looking blue, having low blood pressure and problems breathing, feeding or gaining weight.

Marin's mother, Anna Claire Varnado, said Marin was born full-term and weighed almost 9 pounds. She was diagnosed at a day old after doctors heard a heart murmur and ran an echocardiogram. At 3 weeks old, Marin had surgery at Boston Children's Hospital, one of the top pediatric cardiology centers in the nation.

"That one did not go well," Anna said. "She was on an ventilator for a month. Her chest was left open for two weeks, and we pretty much lived in Boston for about two and half months. And then we flew back. She had a pacemaker placed as well at about six weeks — almost two months."

Marin was born with double outlet right ventricle and a ventricular septal defect. With double outlet right ventricle, two major arteries exit from the right side of the heart. Normally, the aorta comes out of the left side while the pulmonary artery comes from the right. A ventricular septal defect mean there's a hole between the bottom two chambers of the heart.

Once they returned to Baton Rouge, Marin had to have a feeding tube placed because she couldn't eat. She was able to come home at 3 months old. At 6 months, she developed a staph infection at the pacer site in her abdomen, possibly because of the feeding tube surgery. They had to go back to Boston, and Marin was on an antibiotic IV with temporary heart pacing wires for a few weeks. At about 7 months old, she received her second pacemaker.

In early December, Marin said her pacemaker malfunctioned.

"I looked back, and it was jumping out of her chest. You could see it jumping," Anna said. "There was a lead malfunction."

They were in the emergency room three times, and attempts to reset the pacer were made to no avail. The newest one was implanted Dec. 13.

Anna said Marin has her own heart rate, it's just low without the pacemaker. "She'd get pretty tired pretty quick," she said.

After a few moves around the South, Marin and Anna moved to Monroe — Anna's hometown — in 2015.

Marin attends Sallie Humble Elementary in Monroe. Marin has to avoid contact sports and magnets because of her pacemaker, and Anna said she's a "super-smart," active child. She might need the nurse at school a little more than most kids, and Anna said the school has worked hard to help Marin get back on track after the time she missed for her surgery in December.

"She's just a normal kid, and that's what she wants to be," Anna said. It's important for people to see the normal side.

It would be easy to be consumed with the what-ifs, Anna said.

"But she's so confident and independent and strong, and I really attribute that to us not hovering over her and letting her be confident and independent, and she just handles it like a champ. I am just so proud of her," Anna said.

Marin shares her story and wants people to know she's OK and doesn't have to be treated differently because she has scars.

A determined heart

When she was 15 months old, Eva Edinger's doctors told her parents she wasn't likely to live.

She was born with an atrial septal defect. She was diagnosed at 1 year old and referred to Dr. Terry King, a pediatric cardiologist. She had surgery to close a hole in the wall between the heart's top two chambers at West Jefferson Medical Center in New Orleans.

"The doctors told my parents that they were preparing for my death. I was put on a heart-lung machine after my surgery, and I fell into this really small category of patients that really aren't going to survive. You know, I always have been a fighter, and God had a bigger plan for me, so I was able to pull through, and I've never had any physical restrictions," she said.

She was in the hospital two weeks before getting to come home. She takes daily blood pressure medication and gets screenings twice a year to monitor her health. A lot of patients, she said, have five to seven surgeries, and she was lucky to just have one.

"I've never had any trouble since then, and it's made me a stronger person. It's made me more determined," Eva said.

Now, she dances with Louisiana Delta Ballet, a pre-professional dance troupe, and is very physically active. She will compete in Miss Louisiana this year as Miss Watermelon Festival.

Eva is a biology premed senior at Louisiana Tech University. She plans to start medical school in 2018 and is considering a career in cardiology or pediatrics. She shadowed King and later was hired to work in his office. She said getting to talk to the patients and connect to younger boys and girls who were dealing with what she'd been through was helpful.

Finding community

Anna's family's experience has shaped her professionally as well. She's in the nursing program at the University of Louisiana at Monroe. Her original degree was in communications, but she fell in love with health care after having Marin. She started the prerequisite classes when her daughter was about 4 and has worked in hospice.

"Really a huge outlet for me has been Facebook," Anna said. She cited Louisiana Heart Moms, a Facebook group for parents of children with congenital heart defects. "There's a lot of parents on there who are able to bounce things off of each other."

She said it's a great resource for parents to get answers from other people who are dealing with the same issue.

"There are so many different ways that you can connect with people and kind of provide words of encouragement and hope, so that's been a big one," she said.

Anna said while they lived in Baton Rouge she volunteered at the Louisiana Pediatric Cardiology Foundation. LPCF, she said, provides grants for South Central Louisiana families who have to travel for their child's medical care. The group also provides heart screenings for high school athletes in and around Baton Rouge who might be at risk for sudden cardiac death. Anna became involved in the group after her family received a grant.

She said she wants more parents to know that screening is necessary. Louisiana now requires hospitals to check a newborn's blood oxygen level before it can leave the hospital.

"A lot of times these kids will be undiagnosed for years, and unfortunately some of them drop at an athletic event, or something like that, due to an undiagnosed defect. That's why we push awareness. You read these horrible stories about these kids just really dropping dead in the middle of a sporting event and really how devastating that must be because it could have been fixed," Anna said.

More research needed

On March 1-2, Eva spoke with legislators in Washington as part of the Congenital Heart Legislative Conference.

The Adult Congenital Heart Association, The Children's Heart Foundation and Pediatric Congenital Heart Association put on the annual event, which includes patients, relatives and medical staff familiar with CHD.

"It's so cool because you meet all these people who are directly and indirectly affected by CHD," Eva said. "They talk about all their surgeries they've had, and some are my age, and some are like 40 years old."

The group goes to Capitol Hill and talks to state legislators about the need for research funding with the Centers for Disease Control and Prevention and National Institutes of Health.

"They kind of teach you how to talk to legislators — put it in a more simplified version — because it's kind of hard for them to understand," Eva said.

Her mother went with her, and the pair shared two sides of her story. Eva was excited to return.

In 2015 at the national conference, she said, she met a lot of researchers working in the lab on birth defects, and the issue will require many different avenues to be investigated.

Eva said research isn't going to stop until a cure is found, but because the heart is so complex it won't be one cure.

"It's a lifelong disease, it's noncurable, and it does not discriminate," Eva said. "You never know if you have it unless it has been detected, and a lot of times it does go undetected for so long in a person's life, and there are so many repercussions from that. I think just being aware of the effects of the disease — understanding that so many people are dealing with this. You know, it's the No. 1 birth defect."

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