9-Year-Old Girl Thriving Despite Being Born with Half a Heart
By Desiree BattagliaCardiology February 28, 2020
Born with a congenital heart defect known as tricuspid atresia, a pacemaker now helps regulate her heart rate and blood flow. Breanna’s heart journey began while she was still in utero when her mother, Ashley Ruud, went to Northwestern Medicine Central DuPage Hospital for her 20-week ultrasound appointment.
“We were excited about the ultrasound to find out if we were having a boy or a girl,” Ashley said. “Instead, we learned there was something wrong with her heart.”
The tricuspid valve between two of Breanna’s heart chambers was not formed. Instead, there was solid tissue between the chambers which restricted blood flow and caused the right half of her heart to be underdeveloped. The defect is rare, accounting for about 1 to 2 percent of all congenital heart disease cases.
“The interesting thing about tricuspid atresia is that it can mean any number of things,” said Ahmad Sami Chaouki, MD, pediatric cardiologist at Lurie Children's at Northwestern Medicine Central DuPage Hospital in Winfield, Illinois. "Some patients may have too little blood flow to their body or too little to their lungs or even too much to their lungs. We have to assess what is needed to supply the body with enough blood flow with adequate oxygen levels. This can result in needing a variety of different surgical procedures."
Dr. Chaouki now sees Breanna every six months at Central DuPage Hospital to check on her pacemaker. Although Breanna’s heart is doing well, the checkups are comforting to Ashley, who also appreciates the visits being close to home.
“It’s peace of mind to have her check in at CDH,” she said. “For us, the appointments aren’t a burden, it feels like a safety net to know they’re watching over her so carefully.”
As Breanna went through her various surgeries, Ashley couldn’t help but worry about how the surgeries might impact her young daughter. Babies who go through a bypass surgery are at risk for neurodevelopmental issues later in life.
“We thought she would have speech delays, because she was on a ventilator and had a trach tube and couldn’t make any noise,” Ashley said. “When the trach was removed before her second birthday, she just took off with her speech. It’s been amazing to see she doesn’t have any of the delays we were warned about.”
Ashley describes Breanna as an energetic young girl who thrives off being in the spotlight.
“She likes to be on stage and perform, she’s in ballet and tap and loves to dance and sing,” she said. “As a mom, when she was younger I was trying to prepare myself for her not being able to do so many things, and now it’s like, ‘wow I didn’t have to worry about that.’ She’s just amazing.”
There are a number of things Breanna and her doctor need to watch for, including circulation issues and congestion of the liver because the way blood flows through her heart is different than normal. Eventually, Breanna may need a heart transplant but for now, Ashley and her husband are focused on keeping Breanna as happy and healthy as possible.
“As she’s gotten older, she’s more aware of her heart and of being different, so that’s become a little more difficult for us to tackle. We have to keep her focused on all she can do rather than what she can’t,” Ashley said. “Breanna is also learning as she’s getting older that she has to monitor herself. If she doesn’t feel well, or thinks something is going on, she has to tell us that.”
Although Breanna is doing well today, Ashley will never forget what it was like to hear Breanna’s diagnosis and watch her baby go through four surgeries; the first when she was just days old. To support other parents with children who have a congenital heart defect, Ashley got involved with the Pediatric Congenital Heart Association of Illinois (PCHA-IL) shortly after taking Breanna home from the hospital. As a parent leader, she is still an active member of the group today.
“Even though 1 in 100 babies are born with some type of congenital heart defect, you still feel very alone,” Ashley said. “You see all these other healthy babies around and you’re wondering, ‘why is my baby sick and needing all these surgeries?’ I sought out other parents like me, and found lots of others were feeling the same way.”
Ashley leads the meetings held at Central DuPage Hospital every other month. The support group often features guest speakers or an activity, and allows time for individuals to talk and share their own experiences.
“The hardest part about heart defects is how different they all are – we call them snowflakes,” Ashley said. “We may all have different journeys, but we’re all going through the same experience with congenital heart defects and the same feelings, especially when things can change so drastically from one day to the next.”
The next scheduled meetings will be held on March 5 and May 7 inside the Pediatric Outpatient Center on the first floor of Northwestern Medicine Central DuPage Hospital, 25 North Winfield Road, Winfield. To register for the support group, call 630.933.4234.