guest post by Christa Frankos Duggan
In my heart, I thought what happened to us was one in a million. But, we are much less unique than that. We are one in one hundred.
I realized my life had changed after I was in the recovery room from having an emergency C-section. My husband was not with me and my newborn son, Gabe, was not with me. I was all alone, waiting for “news” about what had just happened. The doctors whisked them both away and I was left alone. As I lay there with my thoughts, I let the ‘what if’s’ get the best of me. What if something was seriously wrong? What if my first born baby wasn’t going to make it? I was extremely devastated by what could be but at that moment I had the realization that whatever was going be the outcome, I would remain optimistic and grateful.
On April 30, 2007, when I was 35 1/2 weeks pregnant, I was walking my dog and my water broke. I took my time getting to the hospital because this was my first baby and I didn’t want to be laboring there for hours on end. I was such a happy pregnant lady, smiling the whole time! I ate well, exercised and I went to all of my prenatal appointments. My OB said I was doing great and the baby looked fine. So, I took my time getting to the hospital because that is what I was told to do.
When I finally got there, freshly showered with my overnight bag packed, even more time passed as the nurses tended to other, more pressing situations. When they finally hooked me up to the monitors things got scary. They discovered that Gabe’s heart was beating over 300 beats per minute which is more than double the normal rate for an unborn baby. Even more scary, they discovered that Gabe was in SVTs, Supraventricular Tachycardia. He had an abnormal heart rate due to improper electrical activity of the heart. The crazy thing is that nobody told me what was going on just yet. They rushed me into the OR for an emergency C-section but I didn’t know why.
It was several hours after I delivered that I finally found out that Gabe was born with Hypoplastic Right Heart Syndrome (HRHS). My husband gave me the terrible news. He showed me a rudimentary drawing of the heart that the doctor sketched on a piece of paper to help explain the problem. Gabe’s right ventricle was underdeveloped and could not pump blood to the pulmonary valve for transfer to the lungs.
I had no clue just how much my life was about to change. And yes, everyone’s lives change when they have their first born child, but mine was really quite unimaginable. The fact that I would not hold my son after birth, the fact that he would need to have open heart surgery 3 days after delivery and the fact that it would be over 6 weeks before I took him home to his sweet little nursery was life changing enough. But, the worst thing was that we would be in and out of the hospital for visits and surgeries the entire first year of his life. Poor Gabe was poked and prodded so often that just the sight of a doctor threw him into a frenzy.
While pregnant, my OB never caught that Gabe had a half of a heart during my numerous ultrasounds. I actually don’t know if I would’ve been happier knowing about Gabe’s heart defect before delivery but it still makes me very angry. If I’d known, I could’ve changed my birth plan. If I’d known, my delivery would not have been an emergency and instead would’ve been well planned out with a team of doctors already chosen. If I’d known, I would’ve been at a hospital that specialized in pediatric heart defects to perform my son’s first surgery after the birth.
I feel strongly that this should not happen to anyone else. After all, if Gabe and I are so common that we are one in one hundred, then more needs to be done for doctors to detect heart problems in-utero.
I am now part of a charity organization, Hopeful Hearts, that is doing its best to educate professionals to more easily identify heart defects during routine ultrasounds. In advocating for something as simple this I can make a difference for future Moms who are in similar situations to mine.
One in one hundred children are born with some type of heart defect. Chances are that my family is not the only family you have known to go through this ordeal. Congenital Heart Defects (CHDs) are globally the #1 birth defect in newborns. In fact, CHDs kill twice as many children as cancer does every year. The information that I received on that devastating yet ironically wonderful day of Gabe’s birth should never have been a surprise.
Gabe is my warrior. I am so proud of his accomplishments and he is only nine. He has fought for so much of his life and still continues to do so every day. He lives an amazing life guided by his heart. The light that shines through, especially when he smiles, is breathtaking. I love that he has light to give which comes deep from within his soul. It is his mended little heart dancing around with happiness. Although we are one in one hundred, I feel like I am blessed to be one in a million because of Gabe. I’m am lucky enough to truly appreciate his life in all of its crazy, scary, amazing, glory.
Christa Frankos Duggan is an amazing mom and advocate for Hopeful Hearts. She does her best to heighten awareness about heart defects and help other families who have children with similar problems. When she isn’t tending to one of her three kids you can find her drinking some delicious coffee at Portola Coffee Lab, in Orange County, CA where she and her husband own and run the business.