GREEN BAY, Wis. (WBAY) - Congenital heart disease is more common in children than many people probably realize.
Kristyn Allen with Braelyn. Kristyn says, "I haven't actually looked at this in a while. It is more painful now than it was then, and to be honest I have no idea how I made it through that. It was seriously some superhuman strength from God."
Our Action 2 News This Morning reporter Kristyn Allen and her husband, Greg, discovered one of their twin daughters is among the statistics.
She's the one in the one in 100 babies born with a congenital heart defect.
But to their family, and so many others in our area, it's not about numbers.
It's a life-changing and scary diagnosis.
"Just to look at her, it's one of those invisible things. We wouldn't know she has a heart defect, but she does," says Kristyn.
She and Greg are sharing their story during Congenital Heart Defect Awareness Week, hoping to help other families on the same journey.
As we sit down to talk, the family of five, including twins Braelyn and Brielle and big sister, Bailey, all wear matching white shirts with the words 'heart warrior' on them.
They'll wear those same shirts again in March when Braelyn undergoes open heart surgery at Children's Wisconsin in Milwaukee.
"(Braelyn) was born with a congenital heart disease, so she has a heart defect. She was born with a hole in the wall of the lower chambers of her heart, and that needs to be repaired," describes Kristyn.
When Brielle and Braelyn, the bigger twin at birth, were born in December of 2018 at full term, both were healthy and strong.
But at just three weeks old, Braelyn contracted the first of two serious respiratory viruses, landing her in the hospital.
That's when doctors discovered a heart murmur that had gone undetected through pregnancy and at birth.
"When you listen to a heart, you hear that beating sound. When it's a heart murmur, it's a whoosh, whoosh, whooshing sound because that's the sound of the blood passing through that tiny hole in her heart," says Kristyn.
That tiny hole is what's called a ventricular septal defect, or VSD, the second most common kind of heart disease in kids.
"When you think of heart disease, most people think of these modifiable risk factors, things that happen as adults, but what you don't realize is there's a huge population of kids out there that are living with heart disease every day," says Dr. Sara Creighton, a pediatric cardiologist at Children's Wisconsin. "Congenital heart disease is actually the most common birth defect when you look at all the types, and (it) occurs in one percent of the population."
Dr. Creighton says heart disease may be genetic for a small number of babies, but the rest, like Braelyn, form with no good explanation, making it scary to parents.
"Anything with a kid and their heart is completely terrifying to families," says Dr. Creighton.
But she walks them through it.
She says the severity and kind of heart disease varies greatly from child to child.
Some kids just needing monitoring, but others, like Braelyn, require surgery.
Kristyn says Braelyn needs it because her heart is enlarged and muscle is building up on one side from working so hard.
"I asked her doctor what happens if we never do this. Is she just going to go into cardiac arrest? She said, no, that wouldn't happen, but you would see it. She would be more tired. Things like just walking across the room, very easy simple things would make her very tired," explains Kristyn.
"You feel a little better in 2020 with surgery and everything else. If this was 20-30 years ago, yeah, maybe you feel a little more nervous, but I think she's in good hands," says Greg.
Looking back, Kristyn and Greg now realize they missed early symptoms, like tiring easily, struggling to breathe taking bottles and a fast heart beat.
When Braelyn got sick the second time as an infant, last February, that time with RSV, she deteriorated quickly.
CLICK HERE for Part 1 in our reporting on Kristyn's journey and tiny hearts.
A team of doctors rushed her to Children's to be placed on a machine to breathe for her.
It was the only fighting chance doctors gave her.
Even then, it was hour to hour.
"She was probably in heart failure when she got sick, and that made it harder for her," says Kristyn.
They've since learned kids with congenital heart disease generally get much sicker than kids who don't have to fight that battle, too.
But through all this, they remain optimistic and confident good things are yet to come.
"I think she's going to be in better shape once she has the surgery, and hopefully that'll give her a little boost, too and give her a little more energy to do what she needs to do," adds Greg.
CLICK HERE for information on signs and types of congenital heart defects.