Saving Piper's heart

In Patti Seagraves’ nearly four years as a family medicine physician assistant (PA-C) in the greater Tallahassee area, she has seen and treated almost every health condition — from sinus infections and ankle sprains to diabetes and heart disease.

But things look very different from the perspective of a new mom, even one with medical training.

Patti had a picture-perfect pregnancy right up until she began to develop symptoms of preeclampsia, a potentially life-threatening complication that causes high blood pressure and can affect the kidneys and other organs. At 34 weeks, Patti’s obstetrician made the decision to deliver the baby via cesarean section as her condition began to worsen and the risk to mom and baby grew.

Patti gave birth to a healthy baby girl, Piper Lauren, in September. Because Piper was born early, she required a two-week neonatal intensive care unit stay at Tallahassee Memorial HealthCare (TMH), but appeared perfectly healthy.

When Piper was nearly six weeks old, Patti began to see changes in her baby.

“I noticed Piper’s feeding was taking longer and she wasn’t taking in as much,” she said. “But she’s a baby, and babies change their schedules. My husband and I weren’t too concerned at first.”

Their concern grew when Piper’s feeding issues continued, and she spit up a lot when she did eat. “She was breathing pretty fast and sleeping a lot more,” Patti said. “We knew something wasn’t right.”

The new parents had a baby monitor that included a device to track an infant's heart rate and oxygen levels. “Piper’s oxygen saturation levels were in the high 80s and low 90s at the time,” Patti said. “I knew that wasn’t good, and I told my husband we needed to take her to the ER.”

Doctors at TMH ordered a chest X-ray and bloodwork.  But when Piper’s condition continued to worsen, they called in Thomas Truman, MD, pediatric critical care physician at Tallahassee Memorial HealthCare, who arrived at 3 am that day. Piper’s oxygen saturation levels were now down to the low 80s and she wasn’t resting and was struggling to breathe.

“Most babies at this age with breathing troubles are suffering from either a viral or bacterial respiratory illness that irritates the airways or lungs,” said Dr. Truman. “When Piper didn’t respond well to respiratory support, I explained to her parents that I was concerned it was potentially a problem with her heart and asked Dr. Vining to evaluate her.”

Mac Vining, MD, a pediatric cardiologist with Wolfson Children’s at Tallahassee Memorial HealthCare, was called in. It wasn’t the first time Dr. Vining and Patti had met: she and her colleagues at Tallahassee Primary Care Associates (TPCA) had attended several of Dr. Vining’s continuing medical education events and the two had established a close professional relationship.

“I didn’t realize it was Patti until I walked in the room,” Dr. Vining said. “When I was briefed on Piper’s symptoms that morning, I was initially very concerned she had a congenital heart defect. In babies that age, an inability to feed is one of the most concerning issues related to congenital heart disease because feeding is how babies use most of their energy.”

Congenital heart disease is the most common birth defect, affecting nearly 1 in 100 newborns in the U.S.

To determine if his diagnosis was correct, Dr. Vining performed an echocardiogram, a sonogram of the heart’s chambers, valves, walls and the blood vessels. The echocardiogram showed Piper’s heart was enlarged and she also had a bicuspid aortic valve that was severely narrowed, impacting her body’s ability to regulate blood flow from the heart into the aorta.

A Tallahassee-Jacksonville connection

Concerned the baby was so young and in such distress, Dr. Vining knew time was of the essence.

He reached out to his colleagues in Jacksonville, pediatric cardiologists Robert English, MD, and Brandon Kuebler, MD, with the UF Health Pediatric Cardiovascular Center affiliated with Wolfson Children’s Hospital. The three children’s heart specialists were in agreement, and Dr. Kuebler immediately arranged for the baby to be transferred to Wolfson Children’s via the Kids Kare Mobile ICU.

Piper arrived in Jacksonville that afternoon, with an expert cardiac team standing by. Dr. English remembered: “Piper was in critical condition with severe aortic valve stenosis, meaning her heart could not push blood through the aortic valve to get to the body. Her heart was failing, and she needed immediate treatment.”

Dr. Kuebler performed an echocardiogram to confirm the diagnosis before sending Piper to the Cardiac Catheterization Lab, where Dr. English performed an interventional procedure to dilate the baby’s narrowed aortic valve.

“One of Piper’s cardiac nurses, whose name is also Patty, was with us from the Cath Lab to the Cardiovascular ICU (CVICU),” Patti remembered. “She called us when the procedure started, part-way through and when it was finished.

“Then Patty took us down to the Cath Lab so Dr. English could show us pictures of our baby’s heart and tell us how she was doing,” she added. “Since I’m a PA, I wanted to understand what Piper’s heart looked like when he was in there and what he found. Right after the procedure, Piper’s oxygen levels returned to normal. And all of this took place within 12 hours from diagnosis in Tallahassee to treatment in Jacksonville!”

After a short stay in the CVICU at Wolfson Children’s, Piper was discharged, and the Seagraves family was able to return to Tallahassee, where Patti is now a stay-at-home mom.

Heart care near home

Fortunately, Piper is able to have her follow-up appointments with Dr. Vining at a pediatric outpatient specialty center called Wolfson Children’s at Tallahassee Memorial HealthCare. This center is the result of an affiliation agreement between the major Big Bend area health system, Northeast Florida's only children’s hospital, and Tallahassee Primary Care Associates.  

Although Patti never expected she or her family would need the pediatric specialty services that are part of the affiliation, she’s relieved it was there for Piper.

“Tallahassee is a large city, the capital of Florida, but we were lacking in some pediatric specialty services before this affiliation,” she said. “If these services weren’t here, we would’ve had to travel three to four hours to Jacksonville to get the outpatient care Piper needed. That’s not easy when you have a little one. When you have specialty care in Tallahassee, you bring local families a lot of comfort, so this is a phenomenal resource.”