Tuesday 29 Jul 2014

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STORIES FROM THE HEART: Girl born with problematic heart thrives, loves giving others hope they can, too

Published: 9:00 am CDT, January 2, 2014

When River and Chris Triffo went to have the 20-week ultrasound done on their fourth child, they were eager to hear whether they would be having a girl or a boy.

When the technician hastily left the room and returned with a supervisor, the couple from Saskatchewan, Canada, knew something was wrong.

“Our world was turned upside down,” Chris said.

Doctors told the couple their unborn daughter had significant heart defects and the possibility of chromosomal defects. They were given two weeks to decide whether to terminate the pregnancy.

The Triffos decided to continue with the pregnancy and began meeting with a series of specialists. The experience turned overwhelming, as each doctor seemed to offer “more guesses about what would happen,” River said.

“I felt like I didn’t even know what to ask doctors,” she said.

River scoured the Internet, trying to learn more about their unborn daughter’s heart defects and possible treatment. They also sought support groups.

Information, they found. Optimism, they didn’t.

“We couldn’t find any positive stories,” River said. “There was little hopeful stuff out there.”

“It was absolutely terrifying, not having any idea what would happen with our unborn child,” Chris said.

***

Anna Triffo was born in May 2001, with many of the problems doctors foresaw.

A valve on the right side of her heart was shut. This prevented her blood from getting enough oxygen from the heart before being pumped back to the rest of the body.

She also had three holes in her heart, one between the heart’s atria and two between the ventricles; the openings in the ventricles allowed blood to flow between the chambers, although inefficiently.

Anna’s conditions left her blood-oxygen levels around 70 percent. Doctors wanted to wait until she was at least 4 months old before proceeding with a complex surgery that would rework how her heart pumps blood to the rest of her body.

But at 3 months, two of the holes in her heart spontaneously closed, cutting off some of the oxygen her blood was getting. As a result, her oxygen levels plummeted to about 40 percent; surgery couldn’t wait any longer.

There was one more problem. With no pediatric heart surgeons in Saskatchewan at the time, the Triffos had to drive nine hours to Edmonton, Alberta.

***

To adequately supply Anna’s body with oxygen-rich blood, she would eventually need two surgeries.

For now, though, she needed something called a Bidirectional Glenn. It involved connecting the large vein from the upper half of the body to the lung arteries, allowing the oxygen-poor blood from the head and arms to drain directly into the lungs. It went well, and she recovered quickly enough to leave the hospital in less than a week.

The second surgery, called a Fontan operation, was done almost two years later, when Anna was 26 months old. In this surgery, doctors connected the large veins supplying the lower half of the body to the lung arteries.

Anna now relies on the left side of her heart to power her body. Her normal oxygen level is about 94 percent, a little less than normal, which can thicken the blood. She takes a baby aspirin to help thin the blood’s consistency to normal levels, a regimen she’ll need to continue for the rest of her life. There are no more surgeries on the horizon.

***

Because of her condition, Anna will always need an annual checkup with the cardiologist. She has been advised to avoid strenuous, endurance-based cardiovascular activities, such as distance running as an adult. For now, though, the 12-year-old can use her own energy level to gauge how active she should be.

“We don’t know any difference between her and our other children,” River said.

Anna says she likes to tell people about her condition and show off her surgery scar.

“It makes me special,” she said. “People think I’m really cool when they find out.”

Mindful of their traumatic start and happy result, the Triffos decided to share their story to provide others with the hope they were seeking early in their journey. Because Chris is an Emmy Award-winning director and president of a media company, he knew exactly how to accomplish this.

“We wanted to make a video for parents who are facing that uncertainty and try to turn fear into hope,” Chris said.

In 2011, the Triffos created a 2-minute-12-second video about Anna’s story, featuring the then-10-year old girl dancing around. It’s used by the Ronald McDonald House in Edmonton and elsewhere in Canada, hospitals, medical conferences, doctor’s offices and more via YouTube.

 “It was a testament to us when we saw the comments piling up,” Chris said. “Families that faced surgeries were finding hope and so were other young girls who saw Anna running around in the video.”

The family occasionally gets messages from families with sick kids who are about to go into surgery and are fans of Anna. They respond by sending a picture of Anna holding a good luck message.

“There’s nothing that can really prepare you to go through it,” River said. “We wanted to give people hope that sometimes it does work out alright, because that’s what happened with Anna.”

***

Do you know a “Story from the Heart” we should tell? 

Send an email to stories@heart.org that’s as brief or as detailed as you’d like.

Previous “Stories from the Heart” include:

‘Don’t just live, live well,’ urges heart disease, stroke survivor

Woman who ignored symptoms now advises others to be aware

Warning stroke uncovered lurking heart condition; he’s now helping raise awareness

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