By Joel Warner
By Michael Roberts
By Alan Prendergast
By Michael Roberts
By Michael Roberts
By Amber Taufen
By Patricia Calhoun
By William Breathes
At first, Traci was not in any hurry to have kids. The experience of having Mason, now a robust four-year-old, convinced her that she wanted more children. But in the summer of 2012, 22 weeks into her second pregnancy, the couple's perinatologist told them it was time to change their plans.
An ultrasound had revealed that the fetus had both of the primary vessels carrying blood from the heart, the pulmonary artery and the aorta, on the right side — a condition known as double outlet right ventricle, or DORV. In a normal heart, the aorta is on the left side; the unusual configuration was complicated by the fact that the left chamber wasn't receiving blood flow and hadn't developed properly. In other words, Jackson had only half a functioning heart.
DORV is incredibly rare, the Holbrooks were told. It accounts for less than 1 percent of all heart defects. But the approach to treatment has much in common with other kinds of "single-ventricle" defects, all of which impede the heart's ability to efficiently deliver oxygen-depleted blood to the lungs, receive oxygen-rich blood in return, and pump it to the rest of the body.
The doctors at Children's Hospital Colorado, which sees twenty to thirty single-ventricle cases a year, confirmed the diagnosis. They told the Holbrooks that they were looking at three options. One, they could terminate the pregnancy — a decision that had to be made in the next two weeks in order to avoid the complexities of a late-term abortion. Two, they could have Jackson and allow the doctors at Children's to try to rearrange the plumbing, through a series of three surgeries designed to improve the damaged heart's efficiency.
The third option was to deliver the baby but not attempt any form of medical intervention beyond what the doctors called "comfort care." It was likely Jackson would die within a month. Both parents rejected that option from the start, but wavered between the other two.
"We're both pro-choice," Chris says. "We definitely battled with the question of quality of life. Whether this was the best thing for him and for us. Whether it would be selfish or a favor to him not to go ahead with the pregnancy."
"Those were two of the hardest weeks," Traci says. "I actually was the one who was more for not going forward with the pregnancy."
There was no easy answer. Traci read that the survival rate for single-ventricle kids was 98 percent, "but what they don't tell you is that 'survival' is defined as living for thirty days after hospital discharge," she says. "Twenty percent of them don't make it to kindergarten."
Traci underwent an amniocentesis to see if there was a possibility of Down syndrome or some other chromosomal disorder, but the tests indicated no abnormality beyond the bad ticker. Chris knew that their lives would be better on paper, financially and otherwise, if they chose abortion — but he worried that Traci might never recover emotionally from the decision. They talked to parents of other cardiac kids, some of whom were now in their teens or twenties, playing soccer and going to college.
The deadline arrived. Traci had already made an appointment at the abortion clinic. But in the course of a two-hour phone conversation with her mother, a nurse, she decided she was going to have this baby.
"What it came down to, at the end of the day, is that I couldn't take my child's life," she says. "If God did it, that would be God's choice. I would do my best to respect it. But I couldn't do it."
The last few weeks of her pregnancy flew by in a blur. "It was hard to feel fine physically and be a disaster emotionally," she says.
On October 11, 2012, she paused at the threshold of the Children's delivery room, where she was scheduled for a C-section. A team of doctors was poised to swoop in and help if things didn't go as expected. She thought about how she was taking her son from a safe place inside her to an unsafe world.
The delivery was uneventful. She got to hold Jackson for two hours without any tubes or wires on him. Then they took him away from her, to the cardiac ICU.
The good news from the outset was that Jackson's aorta, while oddly placed, was functional; in many single-ventricle conditions, a crimped or underdeveloped aorta can be one of the most serious obstacles to getting blood to the body.
The bad news arrived when Jackson was five days old and about to undergo his first major heart surgery. Traci had noticed that Jackson's ears had looked a little funny at birth, but that had seemed like the least of his worries. On the fifth day a stream of specialists inspected her baby and offered one alarming opinion after another. An ophthalmologist studied his eyes and declared that he had at least one coloboma, a missing notch of tissue that could seriously affect his vision. An audiologist tested his hearing and suggested he might be deaf. A speech therapist advised against having him drink by mouth because he might choke, due to airway issues.