Yet the numbers also indicate a 30 percent drop in the mortality rate of CHD babies over the past decade. A great deal of the credit goes to dramatic medical advances over the past quarter-century that have greatly expanded prenatal detection and surgical options for a staggering array of heart defects; while many of the most complex heart problems can't be truly "cured," pediatric heart surgeons have increasingly refined techniques for re-engineering the system to get blood and oxygen where it's needed. Some of the earliest beneficiaries of these surgeries are now in their thirties and leading healthy lives, without a heart transplant — raising hopes for CHD families worldwide.

Those families may be playing a vital role themselves in the improving survival rate. Like the Holbrooks, many of them are deeply involved in just about every phase of their child's treatment. It's not unusual now for major pediatric cardiology centers such as Children's to connect pregnant women who've just learned that their fetus has a heart condition with parents of other CHD babies, so they can compare notes, confide fears and plan for the future.

"As we see these families communicate in social forums, we get a sense of what other centers are doing," says Stacey Lihn, president of Sisters by Heart, a national organization of mothers of children born with a rare condition known as hypoplastic left-heart syndrome. "We can hook up practitioners who are doing something different, compare and tweak medications, and so on. I believe we're educating the centers as to what's going on elsewhere. We're trying to bridge that gap between families and doctors."

Dr. Adel Younoszai, director of fetal cardiology at Children’s Hospital Colorado, says progress for infants with congenital heart defects has to be measured in small steps.
Anthony Camera
Dr. Adel Younoszai, director of fetal cardiology at Children’s Hospital Colorado, says progress for infants with congenital heart defects has to be measured in small steps.

Lihn's group has sent out more than 600 "care packages" to CHD families over the past three years, filled with items such as side-snap onesies that make it easier to dress a baby hooked up to wires and tubes. Lihn was a featured speaker at the 2012 Democratic National Convention, praising the Affordable Care Act for providing a safety net for her own daughter, Zoe — who'd had two open-heart surgeries by the time she was four months old and was facing an insurance "lifetime cap" that would have deprived her of any future coverage. Her activism has been an inspiration to other moms, including Traci Holbrook.

"The culture of medicine is gradually changing, especially in pediatric medicine," says Lihn. "When you get this diagnosis, you feel so helpless. The one thing families can do is educate themselves and play some role in their child's care. That gives you some sense of control. You have to advocate for your child. You may not have an M.D. by your name, but you know your child best."

Since Jackson's birth, the Holbrooks have been through a crash course in cardiology — with additional lessons in patience, crisis management and adjusted expectations. While juggling a marriage, a job as a paralegal, and raising Jackson's older brother, Mason, Traci has learned more than she ever wanted to about pleural effusion, electrolytes and junctional heartbeats, and she's gotten to the point where she can reasonably gauge Jackson's oxygen saturation level by the degree of blue tinge in his complexion. ("Any day with pink toes is a good day," she says.) But she's also learned that there's a great deal she can't control, that comes down to the mysteries of medicine and prayer and the heart of a samurai.

"I hope he'll outlive me, but to be honest, I don't know," she says. "Right now I'm just trying to live and enjoy my children. I want the chaos of a normal life. That's all I want."

********

There are more than three dozen types of congenital heart defects. In the vast majority of cases, there's no known cause for the condition, no possible means of prevention or cure. Many families don't even find out their child has heart trouble until after delivery; increasingly, though, CHD is being detected before birth, leaving expectant parents facing a formidable decision.

Younoszai, Jackson's cardiologist, likens a parent's discovery of a fetus with CHD to the shock of the sudden passing of a loved one — it's the death of many dreams of "normal" family life, of what that child was supposed to become. "Nobody expects their child to have high medical needs," he notes. "One of the things I've learned is that it's a mourning process. Every time your life goes through that kind of change, where expectations and reality have completely split, there's a sense of loss, anger and denial."

Before Jackson came along, Chris and Traci Holbrook had other plans of their own. Both had come to Colorado looking for a fresh start, from opposite sides of the West. Clean and sober after youthful bouts with drugs and alcohol, Chris had followed some friends to Denver from Phoenix and found work as a technician for a lawn-service company. Traci had come from Montana in 1998 with her first husband and divorced a couple of years later. The couple met through an online dating service in 2003. Two years later, Chris popped the question during a gondola ride at the Venetian in Las Vegas.

"She thought I was going to say 'I love you' for the first time," he recalls. "But there was no doubt in my mind. I'm hesitant to commit, but once I decide, that's it."

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