In the United States, per the American Heart Association, twice as many children pass away from Congenital Heart Defects (CHD) each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD. At the Krueger Hat Trick Foundation, bringing awareness to this heartbreaking condition is our our passion.
Sarah, a Heart Mama, has been kind enough to share her Heart Warrior's inspiring journey with us. Here is Charlie's story.
"My 20 week ultrasound brought two announcements: one, that my older son Henry would be getting a brother, and two, that I had a two-vessel cord which sometimes indicates a birth defect. However, all of my non-stress tests and biophysical profiles which I received near the end of my pregnancy were normal, so my mind was eased a bit.
Charlie was born during a quick water birth on October 2, 2009. His Apgar scores were within normal range. Because he was born so quickly, he did have quite a bit of bruising on his face that unfortunately masked some of his dusky coloring. I noticed fairly early on in the hospital that Charlie did not seem to nurse much, and wasn’t very alert. I was told that because Charlie’s birth was so quick, he was probably just tired.
Charlie continued to seem a bit sluggish through the next morning. When the nurse came to give Charlie his mandatory 24-hour pulse-oximetry screen, his first screen came back low. The nurse thought that perhaps the equipment wasn’t working well, so we went to a different room and tried a different machine. His oxygen levels were still low. The nurses moved Charlie again and gave the screen while he was on blow-by oxygen. Charlie’s levels were still low.
The next few hours were a blur: taking Charlie to the NICU, calling family, my midwife and husband with their arms around me in the NICU, and the pediatric cardiologist coming in to review Charlie’s ECHO and diagnose him with d-Transposition of the great arteries and an arterial septal defect. I remember trying to absorb phrases like 'open heart surgery', 'Ronald McDonald House', and 'transport team'.
Charlie underwent an 8+ hour open heart surgery at U of M Mott Children’s Hospital when he was just 6 days old. Aside from some minor complications (a chylothorax and minor sleep apnea), his surgery and recovery were considered 'perfect'. We returned home nearly 3 weeks after he was born with a special diet, supplemental oxygen, and a variety of medications.
Today, Charlie is an extremely healthy (albeit with some severe food allergies), robust, energetic 5th grader with a huge personality who lets nothing get in his way and truly loves life. In fact, Charlie is a signed actor with Kreativ Artists, represented on both coasts. He has auditioned for major TV network shows and pilots, voice over work, movies, and even Broadway! He also does work locally here in Michigan. We are excited to see where Charlie takes his passion, and are so thankful everyday for everyone who helped save his life.
When Charlie was born, not all hospitals did a routine 24 hour pulse ox screen. I am so very thankful that our hospital did, and do not even want to imagine what might have happened if we had been sent home without having it done. Our hope for the future of CHD is that research is fully-funded and continues to help save the lives of these precious children!"