By Spencer Campbell
The Dallas Morning News
Copyright 2008 The Dallas Morning News
FRISCO, Texas — The petite woman with a ponytail stood out among the hopefuls seeking spots on the firefighters’ elite team of paramedics. Dressed in athletic shorts and a T-shirt, she dragged a dummy twice her weight around two cones. Then she wrestled fire hoses to hydrants, hooking them up like an old pro.
When Sheila Elliott, a 35-year-old Frisco mother, took the physical agility test a year ago, she had much more at stake than securing a spot with the Pilot Point Fire Department. It was about saving a life — her son’s.
“I want to be there when he needs help,” Sheila said.
In November 2002, Sheila was 15 weeks pregnant with twins when, during a routine examination, her doctor discovered that one of the twins had a heart defect. Further tests showed that Sheila’s unborn son, called “Baby B,” suffered from hypoplastic left-heart syndrome, a rare congenital heart disease.
The prognosis: Baby B’s heart was incompatible with life.
An obstetrician explained that the left side of Baby B’s heart was seriously undeveloped and unable to pump oxygen-rich blood to the rest of his body.
Sheila and her husband had four options. They could terminate the pregnancy. They could take Baby B home after his birth, make him comfortable, and let him die. They could enroll him for a heart transplant, with the understanding that infant heart donors are exceptionally rare. Or they could have Baby B undergo a series of open-heart surgeries to “re-plumb” his heart.
That last option, known as the Norwood procedure, subjects infants to a long and painful recovery process, with no guarantee of survival.
Even if Baby B survived the surgeries, his heart would eventually give out, and he would need a heart transplant.
Sheila’s choice
It was an impossible choice for a mother to face. Sheila, already a mother of a healthy 2-year-old son named Dillon, had dreamed that one of her twins would be a doctor, the other a preacher. Now, as she numbly walked out of her doctor’s office, that dream seemed shattered for one of her boys.
“We were confused,” Sheila said, “very confused.”
Sheila and her husband, Jason Elliott, spent the Thanksgiving holidays at Sheila’s parents’ house in Midland. There, Sheila searched the Internet for information on hypoplastic left-heart syndrome. Her eyes darted from one piece of bad news to the next.
She read that HLHS babies typically don’t live beyond a few days after birth. That their hearts don’t receive oxygenated blood. That their breathing becomes rapid and strained. That they can’t muster enough energy to suckle.
Congenital heart defects occurred in 1 percent of all pregnancies. HLHS represented 1 percent of that 1 percent. As she read, Sheila’s face became streaked with tears.
“My heart just sank,” she said.
Family members conducted a tense debate. The choice to do nothing and bring Baby B home to die struck everyone as cruel. Sheila’s father suggested that terminating the pregnancy might be a better option than putting a baby through multiple surgeries. But for Sheila and Jason, longtime Christians, abortion wasn’t an option.
Surgery seemed their only real choice. “There are some decisions in life you’re given,” Sheila said. “You just automatically know.”
Bargaining for life
Seventeen weeks into her pregnancy, Sheila visited Dr. Damaris Wright, a Dallas pediatric cardiologist. Dr. Wright told her, “We need a name for this baby. We’re going to start praying for him.”
Sheila picked Colby. But her prayers took the form of bargaining with God. She recalled thinking: “You either take him when he’s young, but not when he is 3 or 4, 5 or 10. You know I couldn’t handle that.”
Sheila and Jason also tried to be realistic. They talked about making their unborn son an organ donor in the event that he didn’t survive. Sheila had a dream in which she was surrounded by smiling, healthy children. Colby wasn’t among them — his kidneys and liver were keeping the other children alive.
On April 16, 2003, Colby and his twin Ethan were delivered by C-section at Medical Center of Plano. Colby was transported by ambulance to Children’s Medical Center Dallas, where nurses spent the next several days trying to fatten him up on vitamins and protein-rich formulas.
On his sixth day of life, Colby underwent the first in the series of operations to keep his strawberry-sized heart pumping.
The aim of that operation and the next one, four months later, was to rework the plumbing around Cody’s heart. The surgeries circumvented the weak left side of the heart and made the right side responsible for pumping blood. This was done by reconstructing the baby’s aortic arch, a portion of the artery close to the heart, in order to help direct blood to the lungs, where it could be oxygenated.
Doctors deemed both operations a success. For the next four months, Colby seemed to thrive.
“We were told by the [medical] staff that Colby was the HLHS poster child,” Sheila said. “He did everything perfect, and we didn’t have any complications. Everything in life was good.”
Then all at once, everything changed. During a check-up, Colby’s pediatrician, Dr. Charles Goebel, detected a glitch in the baby’s heartbeat, which sounded like a rapidly sputtering car engine. Colby’s heart was pumping out blood to the body before its chambers were filled.
An unscheduled operation was required — Colby’s third open-heart surgery since his birth eight months earlier. Surgeons discovered that an aneurysm had formed in the aortic arch, which had been reconstructed with bovine tissue. They repaired it with new bovine tissue, hoping it wouldn’t deteriorate again.
Second thoughts
Discovering the aneurysm so unsettled Sheila that she struggled with doubts. She didn’t doubt her decision to proceed with Colby’s surgeries. But she began to lose faith that everything would turn out well.
After the third surgery, Colby was miserable — crying inconsolably. Sheila frequently listened to Colby’s heart on her stethoscope, and any abnormal sound sent her into panic.
Colby’s twin, meanwhile, was the picture of well-being. Colby had the same golden locks as his twin brother, but Ethan’s skin shone with a healthy hue and his frame felt sturdy. He gorged himself on solid foods. Colby looked pencil-thin and his color a pasty white. Nearly everything he ate, he threw up.
“I was frustrated and scared in that all of the stories I had read on the Internet started to come back to me,” Sheila said. “It’s not as easy as we thought it might be.”
On April 16, 2004, the family marked the twins’ first birthday. Doctors had inserted a feeding tube into Colby. He vomited often, and when he did, the feeding tube would come out. Sheila recalled seeing Colby crawl around the floor with his feeding tube trailing behind him like an unattended leash.
In early August, Colby was taken by CareFlite to Texas Children’s Hospital in Houston for a nine-hour operation. Surgeons rebuilt the aortic arch again, but this time used tissue from a human cadaver instead of a cow. Doctors believed that the human tissue was less likely to deteriorate.
Days later, doctors again had to open up Colby to fix internal bleeding.
Colby’s heart continued to act fitfully for months after the operation. Doctors told Sheila there wasn’t much to do but wait. But by January 2005, there were signs of improvement and Colby’s heart was beating normally. That allowed Colby’s surgeons to continue with the next stage of the Norwood procedure — his fifth operation overall.
Colby’s scar tissue was so thick that it took surgeons an hour to delicately cut through his sternum. They spent the next five hours routing the oxygen-poor blood returning from his body directly into his pulmonary artery. With his blood flow rerouted, Colby would need only one ventricle to pump blood through his body.
The operation was a success. For Sheila and Jason, a sense of normalcy was now beginning to return to their lives.
A mother’s voice
Over the next two years, Sheila gradually shifted from a mother at her wit’s end to a crusader. The one-time schoolteacher and self-described free spirit had turned into a passionate advocate for raising awareness about congenital heart disease.
In January 2007, she entered and won a Frisco beauty contest for married women, earning the opportunity to compete for the Mrs. Texas United States title. But her real goal was to secure a platform to publicize her crusade.
This year, Sheila successfully lobbied the Frisco City Council to mark Valentine’s Day as Congenital Heart Defect Day.
Currently, she works part time as a paramedic for CareFlite and as a member of the Little Elm Fire Department. She also gives speeches and PowerPoint presentations about infant heart disease.
In April, Colby’s fifth birthday found him in much better shape than his first. He rumbled around the house, playing tag and other games with Ethan, his chubby cheeks glowing pink.
The twins have always shared a strong bond. Even before they could speak, they developed their own singsong, hiccupping kind of language.
That bond will be tested this year. Instead of going to kindergarten, Sheila wants them to repeat preschool to help them gain more maturity. For the first time, however, they will be separated. Meanwhile, the graver issue of Colby’s long-term health remains.
Sheila still searches the Internet for stories about children like Colby, but she seldom finds what she’s looking for — hope.
“The most frightening thing is that the journey isn’t over, and will never be,” she said.
Instead, there are mornings like this one recently, when Sheila was startled awake by Ethan’s shrieks.
“Wake up, Colby! Wake up!” Ethan screamed at his twin brother.
Colby wasn’t responding. Sheila, her fears spiraling, asked Jason to check on their son. She simply couldn’t muster the courage this time to do it herself. So Jason ascended the stairs into Colby and Ethan’s bedroom.
“He’s asleep. He’s fine,” Jason reported a few moments later.
Sheila breathed a little easier — at least for now.