When a child’s life hangs in the balance, whose advice can parents live with?
Kerry Salomon hoped that getting a second opinion would resolve her dilemma: whether or not to repair her baby girl’s rare heart defect.
It didn’t. Neither did the third opinion. Or the 10th. Or the 15th.
Awash in data, Salomon found herself unable to decide between a risky new surgery and a wait-and-see plan that could prove fatal before her daughter’s 40th birthday. Each heart specialist said something a little different.
The Boca Raton, Fla., mother was in agony, even though Kay was seemingly in perfect health.
Since Kay’s birth in September, Salomon had spent endless hours on the phone with doctors or on the Internet researching heart defects. Her allergies and thyroid condition flared up.
She and her husband, Keith, a computer specialist, spent thousands of dollars flying Kay to see the nation’s top pediatric heart surgeons and cardiologists. When they returned home recently, they were no closer to an answer.
“I’m so confused,” said Kerry Salomon, 37, watching Kay’s wobbly attempt to stand in their living room.
“This has become my life. I haven’t been able to sleep. I wake up in sweats, I’m worrying so much. You would be neurotic too. You can’t know until you’re a parent.”
The Salomon dilemma is more than just one family’s struggle with a rare illness.
It could be a textbook case in the travails of being a modern patient. In an age when we are told to take charge of our health care, educate ourselves and question our doctors, how much is too much?
When does researching an illness turn into an obsession that leaves the patient or her parents overloaded and paralyzed?
Some of Kay’s doctors say Kerry Salomon long ago crossed that line.
“They’re making a mistake by going to too many doctors,” said Dr. Richard Zakheim, a cardiologist at Miami Children’s Hospital who examined Kay. “They’ll never all agree. You’re just going to drive yourself nuts.
“We like when people ask questions and are knowledgeable. But too much is too much. At some point, you have to pick a doctor and trust that doctor.”
And be careful about medical sites on the Internet.
Heart specialists say that half of the information put out by parental and support groups is inaccurate or misleading. Even Web sites of universities, doctors and hospitals are not perfect. A study published recently in the journal Pediatrics showed that 80 percent of sampled articles about childhood diarrhea from those sources carried inaccuracies.
Kay’s heart defect occurs only once in several hundred thousand births. What’s more, her internal organs are all on the wrong side of her body. They work but make her case one in a million.
In her heart, the pulmonary artery (which is supposed to carry oxygen-depleted blood from the heart to the lungs) and the aorta (which is supposed to carry oxygenated blood to the body) are reversed. Were that the only defect, her body would get only unoxygenated “blue” blood and she would die without open-heart surgery.
Luckily, nature also reversed Kay’s atria (the two upper heart chambers) and their blood vessel connections. So her heart sends blood to the right places and she’s healthy. The condition is called physiologically corrected transposition of the great arteries.
But here’s Kay’s problem: Instead of the physically stronger left ventricle pumping blood to the body as normal, the weaker right ventricle is doing it. In that tough job, the right side gives out early; the average patient lives to 38, doctors say.
Kay also has two minor defects: a hole in the heart that lets too much blood flow to the lungs and a narrowed vessel that handily offsets the problem.
Forty years ago, Kay’s bad heart would have gone undetected until she grew weak and died in her prime, Zakheim said. Today’s doctors can catch it. Thus began the Salomons’ agony.
They could choose to do nothing now, fix the minor defects when symptoms appear, and let Kay’s right ventricle work until she needs a heart transplant. Kay could not exert herself, but she could live for decades.
The other choice is a new and rare surgery called a double switch. It involves cutting and correcting the great arteries, then dissecting the heart and sewing in tubes to reroute the blood to the proper ventricles. Fewer than 200 have been performed.
Dr. Redmund Burke, a Miami Children’s Hospital heart surgeon, finally urged Kerry Salomon not to rush, not to do the risky surgery. Wait until Kay has symptoms, then fix the minor defects, he told her. The Salomons made their decision..
“We don’t have to operate,” Kerry Salomon said. “I want her to be here next Christmas.”
