Born with a heart defect, baby soon had seizures, stroke and more

Amber Noggle's first pregnancy ended in a miscarriage. After that, it was a struggle for her and Dustin Serbin to conceive again.

So when they found out Amber was pregnant again after years of trying, they were elated. They did early testing to find out the gender and started a list of potential names.

Walking into their 20-week ultrasound, Amber and Dustin were excited to see their baby boy for the first time. Halfway through the appointment, the sonographer asked Amber to walk around the office a bit to reposition the baby. When she got back to the room, a more senior sonographer arrived to take a closer look at the ultrasound.

Amber felt the atmosphere shift. Her anticipation turned into anxiety.

Something isn't right with our baby, she thought.

A perinatologist, an OB-GYN who specializes in high-risk pregnancies, was called into the room. The doctor sat with Amber and Dustin to deliver the news. Their son would be born with tetralogy of Fallot, a congenital heart defect that's actually four different issues at once.

In those first few days after the ultrasound, they grieved "the loss of a normal pregnancy," Amber said. They understood their son's diagnosis would bring challenges and braced for what those might be.

The night after Dax Serbin was born in Madison, Wisconsin, he stopped breathing. An alarm went off, and doctors rushed into the room. They quickly hooked him up to a ventilator.

A couple days later, Dax developed an infection around his heart. Then he began having seizures. And a stroke.

Beyond the obvious dangers of each episode, the series of setbacks caused another complication. They delayed Dax from undergoing an operation to correct his heart problems.

Dax was finally healthy enough for surgery at 11 days old.

It worked. Doctors repaired all four heart problems.

Dax spent a month recovering in the hospital. He continued seeing a cardiologist for his heart and a neurologist to make sure his brain was developing properly post-stroke.

Now 5, Dax has met every milestone – from sitting up to walking and talking. He's growing and developing exactly how he should be. Since his dramatic start to life, he's known nothing but normalcy.

As a kindergartner, he's able to play sports (his favorites are baseball and soccer) and run around the school playground with no restrictions.

He also understands some of his own story. He knows the scar on his chest is from being cut into by doctors, and he happily tells people about it. "He's going to be a remarkable kid with quite the story to share," Amber said.

"Dax is a dynamo," said his cardiologist, Dr. Carter Ralphe. "His history of congenital heart disease certainly is not holding him back in any way."

While Dax was in the hospital, Amber and Dustin were taught infant CPR and received an Infant CPR Anytime training kit to take home.

Three years ago, Amber, a TV anchor, and Dustin wanted to do something to give back. They launched a campaign to raise funds to buy CPR Anytime kits, with help from the American Heart Association. They wound up purchasing 211 that were donated to families at the hospital where Dax received his care, as well as neonatal intensive care units at other Madison-area hospitals.

When they were ready to consider adding another child to the family, Amber and Dustin did genetic testing to ensure there was no genetic link to Dax's heart condition. When the test came back negative, they felt more at ease and became pregnant quickly after.

Throughout most of the pregnancy, Amber felt anxious, even though all the tests and checkup appointments went smoothly. They even did a fetal echocardiogram to make sure their baby's heart was OK. But until she could see him face-to-face and know he was healthy, Amber was scared.

On the day Xander was born, she finally breathed a sigh of relief.

And for Dax, his little brother is just one more person he can share his heart story with.

Stories From the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.