Stephanie and Brennen Lewis were scheduled to attend an ultrasound before hosting the baby’s gender reveal party they had planned for family and friends. They were eager to see their first baby again.

Technicians examined the baby’s bones, brain and major organs. The tests also included a scan of the baby’s heart. It didn’t look right.

Stephanie’s doctor immediately referred her to a pediatric cardiologist. On the same day, she underwent a fetal echocardiogram to take pictures of her baby’s heart. The doctor then sat the couple down.

“This is a normal heart,” he said, pointing to a picture he sketched on a whiteboard. “And this is your baby’s heart.”

Their daughter had hypoplastic left heart syndrome. This is a rare congenital heart defect in which the left side of the heart is severely underdeveloped and cannot pump blood properly.

Babies born with this syndrome usually require a series of surgeries after birth. The Lewises will have to wait until their baby is older to find out how serious their condition is.

Stephanie was speechless. She had tears streaming down her face.

That night, at dinner with Brennen’s parents, Brennen encouraged Stephanie to remain optimistic.

“Let’s continue planning the gender reveal,” he said.

Over the next few months, the baby underwent regular ultrasounds and scans. Stephanie was worried about what her daughter would be like when she was born.

Doctors at a hospital in West Palm Beach, Florida, suggested she give birth at a hospital in Miami that was better equipped to care for newborns. The Lewises chose to give birth at a more familiar local hospital and be transported if needed.

Stephanie gave birth to McKenna by C-section. She held her daughter to her chest for a moment, but then her doctors inserted a tube down her baby’s throat to help her baby breathe.

Brennen and McKenna rode in an ambulance to a nearby airport. They flew to Miami in a medical helicopter.

Brennen FaceTimed Stephanie for two days to update her until she was healthy enough to participate. McKenna will need three open heart surgeries. McKenna had her first surgery on the fifth day.

Stephanie and Brennen fell asleep beside each other while doctors tested their daughter’s heart for seven hours. The procedure redirected blood flow from the affected left side, allowing the right side of the heart to pump blood to the lungs and the rest of the body.

Meanwhile, genetic testing was performed. The cause of the defect was not explained.

Two weeks later, Stephanie and Brennen were able to hold their baby. While in the hospital, they watched Hurricane Irma hit the city from their room. A month after her surgery, mom, dad, and McKenna went home.

Of course, this wasn’t the newborn experience they dreamed of. The Lewis family was in “survival mode.”

Stephanie and Brennen followed the binder filled with instructions. Multiple medications had to be given and medical examinations were required, including daily weight checks, weekly ultrasounds, X-rays, and blood tests. They had a nurse on speed dial to alert local fire and rescue services about McKenna in case of an emergency.

Two and a half months later, they returned to the hospital. Doctors conducted tests to see if McKenna was ready for a second surgery to reroute blood to reduce strain on the right ventricle. She knew right away that she needed it.

McKenna made a good recovery. Her family life settled down nicely, and by her second birthday she was a big sister to a healthy baby boy named Declan.

About six months later, McKenna underwent a third surgery. This procedure completed the rerouting and now all the oxygen-poor blood returning from the body was directed to the lungs.

Finally, Brennen began to release the stress she had been carrying since learning her daughter would need not one, not two, but three open heart surgeries.

“There was definitely a lot of gray hair,” he said.

Brennen then changed careers. He quit his family business to pursue his dream of a career in law enforcement. He is an employee of the county sheriff’s office.

Today, McKenna is a happy, healthy 7-year-old. When she grows up she wants to be a pediatric surgeon. She loves wrestling with her little brother, riding her scooter freely, cheerleading and gymnastics.

“I like roping, but my favorite is balance beam,” McKenna said.

On Christmas Eve, McKenna boarded a plane for the first time. The family flew to Canada to meet Stephanie’s parents. “It was a total surprise for the kids,” Stephanie said. It was the first snow for them too.

McKenna sees a cardiologist once a year and takes medication to stabilize her heart rhythm and blood pressure. Her medication can put a strain on her kidneys, causing McKenna to have muscle spasms and become dehydrated.

“Her ventricle has always been single and there are still obstacles, but they are manageable,” Stephanie said.

The most important thing for McKenna right now is to be active to build muscle, eat healthy and stay well hydrated. If her heart function declines, the next step is a heart transplant.

But she never needs it either.

At school, McKenna is surrounded by supportive classmates and teachers. When the Lewises signed up for the local American Heart Association Heart Walk, she had team shirts made. On Mckenna Day at school, her fellow first-graders wore the shirts. This year, McKenna became the national AHA Heart Walk Ambassador.

For now, the Lewises take comfort in the fact that there are women born with McKenna disease who are now in their 20s and 30s having children of their own.

“In the ’80s, there were children who never made it out of the delivery room,” Stephanie said. “Thanks to advances in her heart treatment, McKenna has a long road ahead of her.”

Stories from the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers, and supporters.