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

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.

8 Comments

  1. San Antonio Real Estate says:

    I know what you have been through Lygeia. Our son was born by an emergency C-section only to discover he had a heart murmur. We consider ourselves fortunate, and blessed for getting that “2nd” opinion. The Dr. was not very enthusiastic about us getting it, but it has so far saved our son a surgery.

  2. Mary Griskewicz says:

    Lygia,

    I am ever so greatful you shared this story and had the courage and insight to take the “power” for baby Ada. We all need to sieze the day and understand that we do have a right to access our protected health information. We need to continue to work with th provider community to share with them the value of the patients role in assisting to make informed decisions for our loved ones like baby Ada. We all must work to improve our healthcare system and assist “Patients and Families” to have access to their personal health information to make informed decisions as a patients right.

    Thank you for all your work and sharing your heart with us!

    Mary P. Griskewicz
    Senior Director, HIS, HIMSS

    • Lygeia Ricciardi says:

      Thank you to Mary and the parent of the other child with a heart murmer–many other people have also shared their experiences and reactions to this post with me via e-mail or other avenues. So often when we are struggling with a health situation (ourselves or on behalf someone we care about) it’s easy to feel alone. This is a great reminder that the Internet provides many opportunities to conenct with friends–and strangers–who have something in common.

  3. Crise Angoisse says:

    Hi Lygeia,

    I’m not a parent yet, but I have a friend who has just been diagnosed with a serious heart problem. I can only image the courage you have to deal with this. I thank you for sharing your personal story for I am sure it will help a lot of other parents.

    Regards,

    Geert

  4. Helen@Baby Shoes says:

    Thank goodness that you were educated enough to question your Doctors rather than just accept what they told you. My husband is a dialysis patient and, if we have learned anything through our dealings with hospitals it is that you have to take responsibility for your own treatment. Ultimately, you are the one who cares most about your own family and, you can’t always rely on the medical profession who sometimes appear to have their own agenda.

  5. Ellen Makar MSN RN says:

    I had the privilege of meeting Lygeia and her daughters while in Washington this spring. I was there as a panelist at a conference to examine and encourage consumer engagement in health care , health and health information technology. I was very encouraged by what I saw. Tools are out there and getting better all the time.. Especially mobile applications… however, as consumers we need to fuel the demand. Having your health record is step one to engaging in your care or in the care of a loved one. Understanding what is in the record is step two. Ask for your record .

    In my role as part of the Alliance for Nursing Informatics Consumer Engagement task force, I advise nurses to obtain their own record….. .before they need it ! As nurses we are professionals, and we are also consumers of health care services ( patients and family caregivers ) If we advocate for ourselves as patients we can better advise the public on how to do so too.

    Lygeia you have a beautiful family and your story is the perfect inspiration for this very important work!

  6. Chris Gibbons says:

    Isn’t this what true access to healthcare and patient empowerment is all about? Enabling patients and caregivers to choose the healthcare that is right for them. PRICELESS!!

  7. real estate says:

    Thank goodness that you were educated enough to question your Doctors rather than just accept what they told you. My husband is a dialysis patient and, if we have learned anything through our dealings with hospitals it is that you have to take responsibility for your own treatment. Ultimately, you are the one who cares most about your own family and, you can’t always rely on the medical profession who sometimes appear to have their own agenda.

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