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Advocate Spotlight: Dana Powell

by Keltcie D. on Monday, February 11, 2013

Dana Powell, North Carolina

On January 1, 2012, we launched the New Year with the birth of a beautiful baby boy, Asa Heard Karchmer. He brought hope, love and wonder into our lives.  Those dreams and hopes were abruptly shattered on day two of Asa’s life.  We came home from the hospital and very soon realized Asa was laboring to breathe. We rushed back to the Emergency Room and within a few hours, we were following the NeoNatal Intensive Care Unit (NICU) transport team down the mountain. Asa was getting oxygen, IV infusions of antibiotics and antivirals for a possible infections, and prostaglandins to treat a possible cardiac condition. As you can imagine, to see our little guy teetering on the brink was almost too much. We arrived at Brenner Children’s Hospital in Winston-Salem in shock.

After a desperate night, little Asa’s clinical picture started to become clearer by midday. The cardiologist confirmed that Asa was born with a very special heart – one which, anatomically speaking, worked just fine in utero but couldn’t make the transition to this world without serious medical intervention. Asa’s particular condition was not detected during pregnancy – nor could it have been. His diagnosis was a congenital heart defect known generally as coarctation of the aortic arch (or more specifically as an interrupted aortic arch): a severe constriction of the main artery leading from the left ventricle of the heart and delivering blood to the entire body. It is among the more common types of cardiac defects among newborns and is often accompanied by other cardiac defects. Our pediatric cardiologist explained that this was not a problem in utero where there is a bypass shunt (called the PDA) between the pulmonary artery and the aorta (connecting below the arch and the coarctation). This duct began to close a day or two after birth. As it did, Asa’s coarctation prevented blood flow to most of his body, putting him into shock.

We sat anxiously with Asa for a week in the NICU until he was strong and stable enough for heart surgery. On January 9, surgeons repaired Asa’s heart. His chest was left open for four more days to accommodate swelling but he otherwise pulled through like a superstar, a miracle.

We just celebrated Asa’s first birthday, reflecting upon what life would have been like if Asa had not made it – and we remain acutely aware that he almost did not. It is, of course, unthinkable for us. It is possible that early pulse ox screening could have dramatically changed the course of events in Asa’s first days of life. If we and his doctors had detected his heart defect on the day he was born, he could have been immediately transferred to intensive care, rather than having to “notify” us of his malformed heart by going into shock and coming very close to dying. It boggles our minds to imagine what kind of a difference this would have made for our family: to have been able to grapple with the intense difficulty of a birth defect equipped with knowledge, rather than having to respond in the crisis moment of a life-threatening emergency. We wish there had been early detection.

Asa has had a very difficult year but celebrated his first birthday healthy and happy. We are full of gratitude and remain convinced that early detection of congenital heart defects is absolutely crucial for saving babies’ lives.

       

 

Blog content provided by Dana Powell, mother of Asa, and You’re the Cure Advocate