During a family trip to New York City in January, 10-month-old Xeyana Ortiz came down with the sniffles. “Just a virus,” the doctors there assured her parents, Chantera Ross and David Ortiz. It would have to run its course, they thought.
The couple expected Xeyana (pronounced zay-ahnna) to get a little better each day, but the opposite happened. “By the time we got home, three days later, her fever was higher and she was really fussy,” Chantera says.
Three times in three days the worried parents took Xeyana to an emergency room near their home in Hampton. On the first visit, a doctor diagnosed a sinus infection and prescribed antibiotics. The next day, Xeyana’s ears were draining fluid, and the ER physician said it was from the sinus infection. A day later, on her third trip to the ER, Xeyana was vomiting and breathing hard and initially diagnosed with pneumonia and dehydration.
“They wanted to give her fluids through an IV,” Chantera remembers, “but they couldn’t get a vein, so they told us they were sending her to CHKD.”
Xeyana arrived at CHKD on the evening of January 16 with suspected pneumonia, but CHKD’s emergency physician found something that was much more alarming: an irregular sound in her heartbeat.
Xeyana was admitted to the hospital. Early the next morning, Tammy DiCharia of cardiology examined her and recognized that she was becoming much sicker. Xeyana was moved to the Pediatric Intensive Care Unit where intensivist Chie Shih and cardiologist Jonathan Fleenor called for an echocardiogram. The test revealed a condition called dilated cardiomyopathy. “Xeyana’s heart was significantly enlarged and barely pumping. It was very, very serious,” Dr. Fleenor explains.
“That’s when I started to get really scared,” Chantera said.
The medical team had to find out why Xeyana’s heart wasn’t working properly and get it working again as quickly as possible. Intravenous medications were started to help the heart’s squeezing mechanism improve, and blood samples were taken to discover a cause.
As the medical team raced to pin down the problem, Chantera was by her baby’s side in the PICU. But time seemed to run out when Xeyana’s monitors sent a chilling signal.
“Her machine started to make a funny noise,” Chantera said. “I heard this ‘beep, beep’ and then this high pitched whine. All the doctors and nurses rushed over and started working on her. I looked up at the monitor by her bed and the line was flat. I broke down. I kept asking them, ‘did she just die?’ I was crying and shaking.”
Xeyana’s heart was so sick, it had simply stopped beating.
Chantera waited in a quiet room nearby, praying and crying, for nearly 30 minutes with social worker Gail Cervarich and chaplain Bennie Kingwood at her side. When Dr. Fleenor entered the room, he had good and bad news. “He told me they got her heartbeat back,” Chantera said. “She was alive, but she was still very, very sick.”
As the hours passed, Xeyana did not respond to medication as was hoped. With her condition deteriorating so rapidly, Drs. Fleenor and Shih turned to their “last option” treatment: a high-tech bypass machine that would do the work of Xeyana’s heart and lungs so her own organs could rest and – they hoped – recover.
Cardiac surgeon John Artrip, who joined Xeyana’s medical team at this point, explains: “The treatment is called ECMO – extracorporeal membrane oxygenation. It’s similar to the heart-lung bypass machine used in open-heart surgery. The machine takes blood from the heart though a tube in the right side of the neck and pumps it through an artificial lung that oxygenates it. The blood is warmed and filtered and returned back to the child through a tube in either the neck or the groin so it can carry oxygen to the tissues and organs of the body.”
Chantera recalls how frightened she was for her daughter. “It was pretty scary to see her hooked up to that big machine and to look at the machine and see her blood going through it. I was terrified she was going to die.”
ECMO is reserved as a last resort for use in life-threatening conditions. Patients have to be put on blood thinners during the therapy, increasing the risk of a brain hemorrhage. “The hard facts are that a third of children with dilated cardiomyopathy don’t make it,” Dr. Fleenor says. “Another third will need heart transplants. And the final third get better.”
Xeyana got better.
Spared the work of pumping her blood, her heart responded to the medication. After three days, pediatric intensivist Tom Cholis and Dr. Artrip gradually weaned her from ECMO. A few days later, she was breathing on her own, her mom never leaving her side.
“She did a little better every day,” Chantera says. “I didn’t want to leave her for a second, but they reminded me that I had to go eat and sleep. Every time I came back, they’d fixed her hair up a different way. Those nurses were so nice, especially Chris and Amanda. And all the doctors. She had a lot of doctors. They always explained everything to me. And Gail [Cervarich] was a big part of getting us through it all.”
Early in March, about a month after her discharge from the hospital and just a day after her first birthday, Xeyana’s grateful parents brought her back to CHKD for a checkup with Dr. Fleenor.
This time, when the cardiologist entered the room, he was delighted. “She looks great,” he said. “I just saw the echocardiogram, and her heart looks great too. It’s amazing seeing her heart today and remembering what it looked like last month.” He will follow her closely for a while and keep her on medications for at least six months.
Xeyana’s ultimate diagnosis was “idiopathic myocarditis” – inflammation of the heart from an unknown cause. The condition was most likely caused by the virus she contracted on her trip to New York, but it’s impossible to know that for sure, Dr. Fleenor said.
There’s no mystery about one thing, however. Xeyana Ortiz is very lucky to be alive. She had battled pulmonary edema, cardiac arrest, acute respiratory failure and myocarditis that caused her heart to fail.
Less than one month later in the doctor’s office, she was grabbing at stethoscopes and squirming to get down from her mother’s lap, a merry miracle in pink, thanks to a multitude of dedicated specialists at Children’s Hospital of The King’s Daughters.
“I know that if we hadn’t gotten her to CHKD when we did, she wouldn’t be here today,” says her mom. “We love CHKD.”
Drs. Fleeno, Cholis and Shih practice with Children’s Specialty Group PLLC at CHKD. Dr. Artrip practices with CHKD’s Surgical Specialty Group.
This story was featured in the second quarter 2009 issue of KidStuff, a publication of Children's Hospital of The King's Daughters. Click to read more patients' stories.