February is HEART MONTH!
Are you CHD Aware?
Congenital Heart Defect (CHD) research is seriously underfunded due to a lack of public recognition. Nearly 2x as many children die from CHD’s than from all forms of childhood cancer combined. Still, funding for pediatric cancer research is 5x higher than funding for CHD. Join us in generating awareness! Advocacy leads to funding, which advances research and, ultimately, saves lives. Children's Hospital Colorado Heart Institute is very dear to our hearts having saved our daughter's life on more than one occasion. Your gift goes to them, specifically for research and innovation. Nationally ranked for heart care and surgery by U.S. News & World Report, the Heart Institue is one of only eight stand-alone pediatric research centers in the country. You can make a direct impact by supporting their commitment to improving the lives of over 20,000 kids and families they see every year.
Our story...
I felt so alone. “We found a hole in her heart,” the doctor said. I watched as he and two ultrasound techs took turns rubbing a jellied wand over my belly. It sounded like they were debating whether or not they saw pulmonary arteries. “What time is it in Japan?" I thought. I call my husband who mercifully answers at God knows what hour. “There's something wrong with the baby’s heart.” The rest is a blur. I know I left with the promise of a call from Children's Hospital Colorado where they specialize in this sort of thing.
It was four weeks before my first fetal echocardiogram. There we meet the wonderful man who is still our daughter’s cardiologist today. We had our diagnosis. Tetralogy of Fallot, Pulmonary Atresia with Ventricular Septal Defect, and Major Aortopulmonary Collateral Arteries. Or in the heart community, TOF, PA w/ VSD, and MAPCAS. Four months later, we gave birth to our Winter Marvel at Children's Fetal Care Center, just upstairs from the Cardiac ICU where she was admitted. She was doing better than expected, and we were soon discharged on Christmas Eve.
On New Year’s Day, we experienced the first of many terrifying moments as parents in this journey. We had to make our first call (of many) to Children’s on-call cardiologist. This led to our first visit to their Emergency Department, and first unscheduled admission. Winter later had her first interventional catheterization (she's had 5 now), and her first of three open heart surgeries thus far. It all happened quickly and we were scared, but the Heart Institute prepared us for this. We followed all the steps in our “Congenital Heart Disease Patients, Family Binder.” The day started with a worried phone call. When the Holiday ended we were not alone. Each member of her Primary Care Team was there, ready to save her life.