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Shielding My Daughter’s Heart: How Being Engaged in Our Health Care Helped My Family

Posted Oct 11 2011 12:05pm
A couple of years ago, I gave birth to a baby girl, Ada. She looked perfect, but the doctors told me she had a significant heart murmur. When I held her in my arms at night I could hear blood rushing through a hole in her heart that shouldn’t have been there.

My husband and I took Ada to a pediatric cardiologist, who said she would probably need surgery to close that hole. For an entire year of tests and hospital visits, we lived in fear that open heart surgery was just around the corner. And then one day it was. “It’s time,” the cardiologist declared, “That hole is dangerously impeding her growth.”

Was Open-Heart Surgery Necessary?

Lygeia with her daughters in Rosetta StoneLygeia with her daughters in Rosetta Stone
Photo courtesy of Regina Holliday
I am grateful to live in a time and place in which surgery—even surgery on a heart the size of a golf ball—is an option. This kind of procedure has undoubtedly saved many lives. But it’s not without risks. More than 100,000 people die in this country every year from preventable medical errors. And hospital infections are a serious problem, too. We didn’t like the idea of subjecting a life so new, so tenuous, to a procedure of such magnitude unless there was a clear case for it. I’m not going to sugar coat this: We were talking about sawing open my baby’s ribs and stopping her heart and lungs.

Was this necessary? Sure, our baby girl was slim, but she was gaining weight steadily, and she was at or ahead of all the other developmental milestones. We knew because we read everything we could about her condition, including her medical records from the cardiologist and her pediatrician, which we used to compare her rate of growth to those on charts we found online. We carefully observed and tracked her eating habits and other behaviors, and we also met with parents of a baby who had recently had open heart surgery to learn the intimate details of what to expect.

Getting a Second Opinion

We shared our questions and concerns about surgery with our cardiologist, but we weren’t convinced by her insistence on going forward with it, especially considering the risks. So we sought a second opinion from a cardiologist at another institution. He performed a test the first doctor hadn’t told us was even an option. The test involved putting a catheter up an artery in Ada’s leg to directly measure the rate of blood flow through the hole. According to the catheter test and other observations by our second cardiologist, the hole was below a dangerous threshold, and showed signs of decreasing in size on its own. Surgery is appropriate for many children born with heart defects, but it turned out to be totally unnecessary for Ada.

So here we are, a year later, with a healthy and spirited toddler with beautifully smooth, unscarred skin on her chest. Obviously we are relieved to have avoided the trauma and risks of surgery.

Knowledge Is Power

I head up the Office of the National Coordinator’s newly -launched Consumer e-Health Program , so I think about technology’s potential impact on consumers and patients all the time. What helped my family avoid an unnecessary, major surgery was using all the tools at our disposal, including health IT, to get critical information on Ada’s condition. The other important thing was our engagement, as parents, on behalf of the patient. We jumped right in and worked with the doctors, rather than waiting for them to tell us what to do.

We started by compiling and reading Ada’s health records. (We all have a legal right to our own health information—so don’t be afraid to ask for it!) There was a lot we didn’t understand—about the records themselves, about Ada’s condition, about our options and what the short- and long-term risks might be. The path forward remained uncertain for many months. But we kept asking questions, seeking information online, and observing Ada closely in our quest to figure out what was best for her. Being an engaged patient (or caregiver) can be very hard work, but the knowledge we gained gave us the confidence to find an alternative when the recommended course of action didn’t seem right.

At ONC, we’ve been working on a website to help people use information and health IT tools to be more engaged partners in their own, or a loved one’s, health and health care. To learn how, go to healthIT.gov and click on information for patients and families .

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