Close to Home: A Personal Story from Pediatric Cardiology

The phrase “close to home” can mean many things. Typically, the expression means that a topic or remark makes us feel uncomfortable in some way. For example, performance reviews at work usually hit “close to home” because, well, it’s hard not to take them personally.

But for Arcadia resident Maria Segura, “close to home” means something entirely different. Since Feb. 13, 2017, her daughter Irais has been under the care of Lee Health pediatric cardiologist Dr. Eric Eason at Golisano Children’s Hospital Congenital and Pediatric Heart Center.

Located in Florida’s heartland of cattle country, watermelons, and citrus, Arcadia is about 90 minutes north of Dr. Eason’s Fort-Myer’s based-office at HealthPark Commons.  However, the drive to the Port Charlotte Specialty clinic is a quick 35-minute drive for Maria and her family.    

Maria’s story begins on the day before Valentine’s Day, when she visited her obstetrician for an ultrasound at 34 weeks of gestation. A whirlwind of developments would occur during the next 24 hours, during which Maria would learn she had developed pregnancy-related high blood pressure, or preeclampsia, a complication that can lead to kidney or liver damage.

Maria’s obstetrician also had concern that the ultrasound pictures of Maria’s fetus suggested a possible heart defect in the baby.

Because the preeclampsia was a life-threatening risk to both mom and baby, Maria was admitted to HealthPark Medical Center under her obstetrician’s care with support by Dr. Eason’s team. She was immediately transferred to the obstetrics/gynecology surgical suite, where she delivered Irais via C-section later that day.

Irais, who weighed 2.2 pounds at preterm birth, was placed in the neonatal intensive care unit (NICU). Dr. Eason also ordered an echocardiogram of the baby, which confirmed the obstetrician’s concern: Irais had truncus arteriosus (pronounced TRUNG-kus ahr-teer-e-O-sus), a congenital heart defect.

“Truncus arteriosus occurs in a developing baby when a single common blood vessel comes out of the heart, instead of the usual two vessels (the main pulmonary artery and aorta),” Dr. Eason explains. “It occurs in less than one out of every 10,000 live births, or about 250 cases per year in the U.S.”

According to Dr. Eason, the most common types of birth defects are congenital heart defects (CHDs) like Irais’s. CHDs affect nearly 1 percent of―or about 40,000―births per year in the U.S., according to the Centers for Disease Control and Prevention.

Until Irais was healthy and well enough for transfer to a surgical facility to undergo a procedure to repair her heart, she would need heart medication to keep her heart functioning properly.

“The Congenital and Pediatric Heart Center is a non-interventional program,” Dr. Eason explains. “We detect and treat heart disease using external tests—rather than instruments inserted into the body—to evaluate and diagnose cardiac disorders. Our pediatric heart team is specially trained to care for children with congenital and acquired heart conditions, from before birth through adulthood.”

“During a mom’s pregnancy, we manage the fetus. We do that with many moms who have babies with heart defects,” Dr. Eason says. “We make recommendations for surgery, if necessary. We counsel the moms before birth, after the birth, and manage children before their surgery, after their surgery, and then follow them afterward as they grow up.”

Should your child require a heart procedure like Irais, the Congenital and Pediatric Heart Center collaborates with surgical centers throughout Florida. After the procedure, that’s when Dr. Eason and his team shine with their expertise in post-surgery medical management, monitoring, and follow-up care of your child’s heart condition.

Follow-up care includes ongoing screening, evaluation and coordinated care from a multidisciplinary team of pediatric experts who offers your child the best opportunity for intervention and treatment, so they can reach their fullest potential.

“Many babies born with these conditions are living longer and healthier lives,” Dr. Eason says. “In the meantime, we establish these wonderful, long-term relationships with families. It’s very rewarding.”

For Dr. Eason, it’s important families like Maria’s can stay in the area to get the ongoing follow-up care their child needs. That means less stress for both parent and child. Instead of a three-hour drive somewhere, the doctor’s office is only an hour away.

When Maria was able to go home from the hospital, but Irais had to stay until she was well enough to be transferred to another facility for heart surgery, Maria recalls feelings of helplessness.

“I'm the mom, I'm supposed to take care of my kid,” she recalls. “To see Irais in the NICU when other parents were leaving with their babies to go home and enjoy them was really hard.”

Maria’s daughter eventually had her heart repaired at a Miami-based facility. She would undergo three more operations during the next five years.

During her surgeries, Dr. Eason and his pediatric cardiology team remains with the family every step of the way, managing and monitoring Irais’s heart care and coordinating treatment.

For example, in summer of 2021 during one of their follow-up visits, Dr. Eason learned Irais needed to rest more often to catch her breath while playing with family members. An echocardiogram confirmed her heart was getting worse.

That September, Dr. Eason referred Irais for surgery to her Miami-based cardiovascular surgeon.

A year later, Dr. Eason reports Irais is doing fine.

“She’s keeping up with her sibling and family members without problems,” he says. “Looking ahead, I think she’ll do very well. She may require another surgery, but we’re here for her and Maria.

She’ll require lifelong follow-up for her heart defect, but with good surveillance should be able to grow and thrive.”

Irais has come a long way since that day before Valentine’s Day when she was bundled inside a NICU incubator weighing scarcely over two pounds.

“To think she was just beginning life. That was how hers had to start,” Maria says, a note of wonder in her voice. “Now, she’s able to participate in the activities any 5-year-old would, like soccer. She also started kindergarten this year.”

So, back to that “close to home” meaning. Her daughter’s healthcare journey has profoundly affected Maria. Because of the care and nurturing Irais’s Lee Health pediatric cardiovascular team has shown the family, the 23-year-old Maria is pursuing a nursing career.

“I want to give something back because the nurses are so amazing,” she says. “I feel like this is a way to help somebody else by becoming one myself.”

Sounds like she took the experience personally — but in a good way.