How a 9-year-old South Elgin girl defied the odds after she was born with half a heart

  • Breanna Ruud, 9, of South Elgin, admires the beads on her necklace, each of which represents a medical treatment she experienced after she was born with a rare congenital heart defect. She brings those "Beads of Courage" to school once a year to raise awareness for her condition.

    Breanna Ruud, 9, of South Elgin, admires the beads on her necklace, each of which represents a medical treatment she experienced after she was born with a rare congenital heart defect. She brings those "Beads of Courage" to school once a year to raise awareness for her condition. John Starks | Staff Photographer

  • Breanna Ruud, 9, middle, was born with a condition called tricuspid atresia, which caused the right side of her heart to be underdeveloped. Here she's with parents Ashley and Jason and siblings Jillian, 4, and Caleb, 13, in their South Elgin home.

    Breanna Ruud, 9, middle, was born with a condition called tricuspid atresia, which caused the right side of her heart to be underdeveloped. Here she's with parents Ashley and Jason and siblings Jillian, 4, and Caleb, 13, in their South Elgin home. John Starks | Staff Photographer

  • Jason Rudd hugs his daughter Breanna Ruud, 9, of South Elgin, who was born with half a heart and is learning to navigate life with her rare condition.

    Jason Rudd hugs his daughter Breanna Ruud, 9, of South Elgin, who was born with half a heart and is learning to navigate life with her rare condition. John Starks | Staff Photographer

  • A rare heart defect doesn't stop Breanna Ruud, 9, middle, from playing with her 4-year-old sister Jillian in their South Elgin home.

    A rare heart defect doesn't stop Breanna Ruud, 9, middle, from playing with her 4-year-old sister Jillian in their South Elgin home. John Starks | Staff Photographer

  • Breanna Ruud, 9, of South Elgin hugs her mother Ashley as they share stories of Breanna's rare heart condition.

    Breanna Ruud, 9, of South Elgin hugs her mother Ashley as they share stories of Breanna's rare heart condition. John Starks | Staff Photographer

  • Breanna Ruud of South Elgin was born with a rare congenital heart defect and spent the first six months of her life in the hospital. She had to have a tracheotomy and be hooked up to a ventilator before she could return home.

    Breanna Ruud of South Elgin was born with a rare congenital heart defect and spent the first six months of her life in the hospital. She had to have a tracheotomy and be hooked up to a ventilator before she could return home. Courtesy of Northwestern Medicine

 
 
Updated 4/26/2020 10:32 AM

One by one, 9-year-old Breanna Ruud carefully pulls an assortment of long, colorful necklaces out of a bag and places them around her neck.

Each piece of jewelry is made up of dozens of beads varying in shapes, sizes and shades. If Breanna had to guess, she'd say there were at least 500 total, but probably more. And they're not just for show.

 

Every hand-strung bead represents a medical experience the South Elgin girl faced in the early years of her life after she was born with a rare congenital heart defect.

Certain colors correspond with different types of therapies: physical, occupational and speech. The smaller beads are for blood draws or X-rays or CT scans.

Four of the beads symbolize Breanna's four open-heart surgeries, the last of which took place just before she turned 4. And the lightning bolt -- that's one of her favorites -- represents the pacemaker in her abdomen that keeps her heart beating fast enough.

From her size, strength and spirit alone, you wouldn't be able to tell that Breanna only has half a heart. But every year, she brings her "Beads of Courage" to school, shows pictures of her surgeries and explains her condition to her classmates.

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She wants them to know what she's been through. And with one in 100 babies born with heart defects, she wants them to know she's not alone.

The diagnosis

Ashley and Jason Ruud knew something wasn't right during their 20-week ultrasound.

They had been through all the scans and doctor appointments before with their oldest son, Caleb. So when the technician left the room after checking their unborn baby's heart, they started to fear the worst.

Breanna, they soon learned, had a condition called tricuspid atresia, which was causing the right side of her heart to be underdeveloped. The rare defect is found in less than 2% of all congenital heart cases, Northwestern Medicine health officials said.

Learning of Breanna's heart disease months before her birth was somewhat of a blessing in disguise, Ashley Ruud said. Though many defects go undetected, the Ruuds were able to meet with cardiologists, familiarize surgeons with the case and prepare for their long and difficult road ahead.

                                                                                                                                                                                                                       
 

But as a pregnant mom, she said, the news was simply devastating.

"It was very daunting to know that she was much safer in me than she was out in the world," Ruud said.

When Breanna was born June 7, 2010, at Northwestern Medicine Central DuPage Hospital, she was immediately intubated and transported to Children's Memorial Hospital, now Lurie Children's, in Chicago.

Her first open-heart surgery was performed when she was just 3 days old, a palliative procedure that wouldn't fix her defect but would make it compatible with life.

As she was being extubated about a week later, Breanna went into cardiac arrest, requiring doctors to open her up again. All her organs took a hit from that traumatic experience, her parents said, but her heart miraculously "sprung back to life."

For six months, Breanna remained in the hospital while her parents rotated their daily visits and relatives looked after Caleb, who was 3 at the time. That routine became grueling, the Ruuds said, and they finally decided it was time to take their daughter home.

The only way to do that was to give her a tracheotomy and keep her hooked up to a ventilator -- and doctors weren't sure whether that would harm her or save her life.

Beating the odds

On a Tuesday after school, a few months before her 10th birthday, Breanna twirls around her living room almost instinctively as her 4-year-old sister, Jillian, follows close behind.

With her pacemaker, Breanna can't play contact sports or do anything as strenuous as gymnastics, she explains. But she does take dance classes -- tap and ballet -- and she just started violin lessons this past year.

Watching her lively, vivacious daughter now, Ashley Ruud says it's hard to believe there was a time when she couldn't eat through her mouth or breathe on her own or ride in the back seat of a car without someone next to her.

That was life for the Ruud family when they first brought Breanna home, full of worry and uncertainty. But as she grew over time, she repeatedly beat the odds.

Her third major surgery took place after her first birthday. About a year later, the tracheotomy tube that helped her breathe was removed, and she started talking and eating solid foods right away.

Breanna's fourth surgery was the most important, albeit the most risky, in allowing her to move forward with a somewhat normal life, her parents said. It was during that procedure that she received a pacemaker to regulate her heartbeat.

Other parts of her body have been affected by her defect, Jason Ruud says, including her liver function and brain development. She's at risk of developing additional side effects as she gets older, he says, and it's possible she'll eventually need a heart transplant.

But although she often has to sit out of gym class, Breanna's condition hasn't stopped her from traveling with her family, or playing outside with her friends, or going on low-impact rides at the amusement park.

"It's definitely changed the way we live our lives," her dad said, "but we just adjust."

"We have the philosophy that her life is a big question mark," Ashley Ruud said. "We don't know what the future holds. There are no guarantees."

Giving back

Breanna's team of health care workers has become like a second family to the Ruuds.

They've cared for Breanna in her weakest moments, cheered on her recovery and supported her family through the ups and downs. One night nurse even asked Breanna to be the flower girl in her wedding.

So whenever she walks into a six-month checkup with her cardiologist, her mom said, those doctors and nurses are always thrilled to see how far she's come.

"I think she really defies what they thought was going to happen," Ashley Ruud said. "To see what she can do now is just amazing."

Though every case is different, she said, the success of Breanna's medical journey so far has been used to help other pediatric heart patients. As a mom who's been through it, Ruud has volunteered to support and talk with parents who are navigating similar experiences.

"I want to give them that little bit of hope that we were missing," she said.

Breanna has done her part to raise awareness for the cause, too, primarily among her peers and teachers at Anderson Elementary School in St. Charles.

In honor of Congenital Heart Defects Awareness Week this past February, she made a presentation to the PTO, sent out flyers and collected about 600 coloring books, plus Crayons, for kids with conditions like hers. It gets boring sitting in a hospital bed all day, she says.

Every morning that week, her principal read a heart-related fact over the loudspeaker -- did you know a newborn's heart is the size of a walnut? -- and Breanna answered a plethora of questions from her classmates, many of whom were previously unaware of her condition.

"I've been there, and I know what it feels like," she said, "so I wanted to give something back."

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