Complete or d-transposition of the great arteries was uniformly lethal until the advent of the atrial switch procedures (Mustard, Senning). However, these procedures opened up a Pandora’s box of long-term problems, including failure of the systemic RV, baffle leaks and obstruction, pulmonary hypertension, and dysrhythmias.Thirty-three days ago, my 22-year-old daughter had an eight-hour open heart surgery at one of the top cardiac care facilities in the world. On my employer's health insurance.
Thank you, President Obama.
Her Pandora's Box of problems began opening in September 2010. She worked full time, went to college part time. She was doing all the "get ahead" go-go-go moves conservatives love to laud—paying taxes, working, going to school—all the while keeping her regular cardiology check-ups. With a heart pumping in reverse, a pacemaker, strong beta-blockers, an internal cardio-defibrillator, and a terrific cardiologist specializing in adults with congenital heart defects, she was able to function at a level that made her indistinguishable on the surface from any other young adult.
While she was insured as an adult through work, it was not an ideal plan for someone with her condition—high deductibles, high co-pays, high out-of-pocket on a salary set right at living wage. Her employer hires lots of young, healthy adults and for those workers, it serves. For my daughter, not so much. Until Obamacare, it was the best she could do. My employer, on the other hand, had a great insurance plan. The moment adult children under 26 became eligible, I moved her onto my insurance, and with zest and thankful prayers, I paid the extra premium. Just in time, as it turns out, for the downward spiral of hospitalizations.
You want to know what it's like to hear your daughter is at high risk for something called sudden cardiac death syndrome? No, you don't. Really.
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Understand this, though: The last thing you want to be inflicted with, on top of every other worst case scenario playing out in your panicked brain, is concern about whether the good news is that you'll have to help your daughter figure out how to declare medical bankruptcy from a hospital bed at age 22.
Again, thank you, President Obama.
This population of individuals is particularly vulnerable because they suffer from conditions they have had all or most of their lives. They have received coverage and treatment as children, only to have it taken away at a time in their lives when they are expected to become self-sufficient. To complicate matters, these patients, who are generally capable of working, often have difficulty finding employment because of their health history.Her employer kept her on the books under the Family Medical Leave Act for 12 weeks, and then—God bless them—voluntarily extended that three more months. They wanted her back, but no end was in sight. She went on disability during the long, long wait. Will her job still be there when she's fully recovered this summer from her surgery? Maybe, maybe not. There's no guarantee. And I suspect in this job market, without a college degree, with the need for time off from work for extensive surgical follow-ups, with new restrictions on activity because of a new porcine mitral valve, any job search is going to be a tough one.
Many of these individuals may not realize that they should be receiving regular care, and even for those who seek care, access may be limited by insurance considerations…. Because the prevention of secondary disability is an important part of ACHD management, this lost opportunity translates into increased human suffering, reduced productivity, and societal cost.Increased human suffering, reduced productivity, societal costs. That's a bunch of cardiologists talking, not bleeding heart commie liberals. We pay a cost as a society for these lost young people—the hundreds of thousands of them saved in infancy through mind-blowing (and expensive) medical advances, extensive interventions, the most cutting-edge medical technology, who are abandoned to a Darwinian free market, uninsurable, in their 20s.
All the care wasted over the years! My God, it's mind-boggling, all the cardiac specialists and facilities, our family agony, the burden put on my daughter herself as she became a teen, to follow to a T complex instructions: make every follow-up appointment, avoid contact sports, no weight lifting, take your beta blockers every 12 hours, stay away from caffeine, track your palpitations, get enough sleep, don't forget your medical ID bracelet, carry your device card and ask for a pat down when you go through TSA checkpoints. Then the scores of echocardiograms, the half-dozen catheterizations, the two ablations … and even earlier: the first major heart surgery at two days old, the second at 10 months, the closed heart surgery at three months, the blown-for-life femoral vein, the lifelong scars, the pacemaker in the abdomen, the pacemaker moved to the shoulder, the Holter tests, the blood tests three times a week for the first nine months of life ....
All of that, building entire lives around these absolutely essential instructions and tasks to keep a child thriving, growing toward productive and meaningful adulthood, all of that just tossed out. Forget the human cost for a minute and calculate the waste of financial investment in these children-turned-adults suddenly told to knock themselves out trying to find an insurer willing take them on.
Before this week, we already were worrying about her 26th birthday, the confusion of entering the nobody-in-their-right-minds-wants-to-insure-you arena. Face it, what we have here is the mother of all pre-existing conditions. But we figured we had a couple of years to learn the bureaucratic ins and outs. Our talisman has been the pre-existing conditions clause of the health care act; we've been hanging on for dear life to that, whispering it to ourselves as we fall asleep at night: "No discrimination due to pre-existing conditions." In 2014, the year my daughter turns 25, that life-saving prohibition goes into effect.
Thank you, again and again and again, President Obama.
But now my daughter's entire future is in the hands of nine black-robed jurists, and we are terrified.
If the politics of this were merely personal, I wouldn't be discussing this. As much as I admit obsessively reading about the health care nightmares of others, I'm not comfortable laying ours out there for all the world to see.
But as special as my daughter is to me, she is not unique.
Congenital heart defects are the most common group of birth defects, occurring in approximately 8 in 1,000 newborns. The improvements in diagnostic, interventional, and critical care skills have resulted in survival of approximately 90% of these children to adulthood. [...]No, she's certainly not alone—in fact, she's in a cardiac cohort now of more than one million, one that's growing larger with every year and each medical advance. And remember, we're only touching on heart defects here. Combine that group with the number of kids born with other organ abnormalities and conditions they wouldn't have survived a generation ago and you're talking millions and millions of children who should be dead, but expensively and inconveniently grow into adults who are not.
Now, for the first time in history, these estimates suggest that more adults than children are living with congenital heart disease, and this population is estimated to be growing at 5% per year.
Perhaps this daily reality colors my reaction to this:
The problem goes so far beyond "infantilization" of adult children that it's laughable. When you're 22, with chronic illness that will likely require millions of dollars of medical treatment over your lifetime—and when there are millions and millions more just like you—it points to deep, real, systemic problems, ones that we uncomfortably avoid throughout this political debate: Who dies? (No one!) Who lives? (Everyone!) At what cost life? (The sky's the limit!) Who pays? (The 10-hour-old baby who gave "informed consent" to agree to pay millions over a lifetime for a reconstructed heart! Wait ...)
What's the point of all the medical breakthroughs if no individual or society can ultimately afford them? Why save children if we're going to abandon them as adults?
It comes down to this: We either let these children die at birth or we as a society agree to spread the cost among all of us. There really is no other way, no matter what fancy conservative "private solution" claptrap is dressed up and churned out by Heritage next week. No one family and no one individual can possibly shoulder the medical cost of "miracle" lives.
That's what's at stake for our family and my daughter at this point in our mucked-up political process. It's what we're avoiding, too, as a society or a silly pundit when we focus on whose name is primary on the health insurance plan. The current health care law is a baby step in the direction of having more universal cost sharing. Lose that, and we're screwed, both as a society and in my family.
One thing is certain: No single case before the U.S. Supreme Court will ever get the degree of attention from my 22-year-old that this one has.
The rest of her life depends on it.