After newborn's death, couple is fighting disease most have never heard of
ZEBULON, N.C. (WNCN) -- After losing their newborn son, a North Carolina couple is working to save premature babies from a deadly condition that many people have never even heard of, necrotizing enterocolitis.
Meghan and Cameron Parker said the first warning signs came at their 20-week ultrasound appointment.
"We were just having an easy, smooth sailing, exciting pregnancy that just turned really quickly," Meghan recalled.
The ultrasound showed some concerns with their son's brain, spine and bowels. While a blood test eased their worst fears, their relief was short-lived.
Meghan developed severe pre-eclampsia. Her blood pressure spiked to dangerous levels forcing doctors to deliver the baby, whom the Parkers named Titus, three months early.
"They're like, 'He's super, super small. We have no idea what's gonna happen when he comes out of the womb,'" Cameron remembered doctors telling them. They feared he might not survive the delivery.
"Titus really defied the odds," Cameron said. The baby entered the world tiny, but full of life.
"They cut the cord and then Titus just starts blaring out crying, which is huge because you know, he was only at 1 pound and 6 ounces," noted his dad.
For a baby as small as Titus, every day was a battle. He went through surgeries and procedures, and even dealt with a perforated bowel, but he seemed to be doing as well as he could be. Then things took another turn.
He was diagnosed with necrotizing enterocolitis, also known as NEC. The disease affects a baby's intestines. Most cases occur in preemies and the death rate can be as high as 50%.
"He was definitely fighting and had a lot of energy for a baby who's super, super tiny and super sick," noted Meghan.
Despite his toughest fight and doctors' best efforts, Titus kept getting sicker.
"What NEC does is it attacks the abdomen, but then once it progresses, it begins to move to the lungs and, and so he actually developed a collapsed lung," Cameron explained. "It can spread into the bloodstream, cause the heart, cause the lungs, cause other organs to stop working."
"It's your worst fear coming true right in front of your eyes," Meghan said.
Twenty-eight days after he was born, Cameron held his son for the first time. Titus was surrounded by love as he took his last breaths.
"You just feel so helpless as a parent," recalled Meghan. "There is nothing you can do to help them and protect them, but also having him in our arms was exactly where we wanted him to be."
The grief felt unbearable, but the strength Titus showed in his short life inspired the Parkers to fight for other babies. They created the Titus Strong Foundation to raise awareness about NEC and to raise funds for research.
The foundation is partnering with researchers at UNC Children's, including Dr. Misty Good, the Division Chief of Neonatal-Perinatal Medicine, who is working to find new ways to diagnose and treat the condition before it becomes deadly.
"Titus's impact is far beyond anything we could have ever imagined," Cameron said. "And to know that lives and families are going to be saved and cared for by what we're going to be doing, you can't really put words to it."