Many congenital heart defects remain undiagnosed until after the baby is born. With critical heart defects this can be deadly because these babies need immediate medical support and will require open heart surgery within a few days after birth. A simple non-invasive test called pulse oximetry can be done after birth to determine if your baby is affected by a CHD. Pulse oximetry measures the amount of oxygen in the blood. Currently many states do not require mandatory pulse oximetry testing on newborns. Symptoms of a possible heart defect in a newborn include: bluish skin/extremities, heavy/labored breathing, trouble nursing and breathing at the same time, abnormal heart rate, failure to thrive.
Heart Hero Jack
Jack Cruz Kramer was born on 11 March 2014 with a surprise diagnosis of Hypoplastic Left Heart Syndrome. I had many ultrasounds while pregnant, but his heart defect wasn't detected until birth. It was apparent the minute he was born that something wasn't right. Low oxygen saturations and a heart murmur called for an echocardiogram, and within 24 hours Jack was flown via jet to a pediatric cardiovascular unit in Birmingham, Alabama. There, he was stabilized and our worlds were shattered with the news of his heart condition. He underwent his first open heart surgery, the Norwood, at one week old. He had a rough recovery, including having to be reintubated several times due to a paralyzed diaphragm. We finally took Jack home for the first time at two months old. After just two weeks, we rushed back to the hospital due to low oxygen saturations. Jack was then flown to Boston Children's Hospital and underwent an emergency cardiac catheterization. Jack then had his second cardiac cath and then second open heart surgery, the Glenn, at five months old. At nine months old, he had his third cardiac cath to ensure his heart was functioning well and thankfully it was deemed a "happy hypoplast heart!" Jack's next procedure will be another cath and then open heart surgery, the Fontan, this summer in Boston.
Looking at Jack, you'd have no idea anything is wrong with him. He may be a bit small due to his half-heart burning so many calories, but he's just like any other kid his age. He loves to be outdoors and go on adventures. He enjoys swimming, playing with balls and cars, and reading. He's a very social little guy with a lot of friends. he's already lived in three states and visited 26 states. He's proving that nothing can hold him back from an amazing life.
You can stay up to date on Jack's story on his Facebook page: https://www.facebook.com/groups/babyjack/
Heart Hero Talia
Talia was born on March 10, 2013 with the CHD Double Outlet Right Ventricle, Mitral Valve Atresia, and Pulmonary Stenosis. Within five hours of being born, she stopped breathing and required intubation. I knew of her defect before her birth, but it did not prepare me for what would be the hardest year of my life. The combination of these three defects led us to have three open heart surgeries, one of which was emergent, a Gastric tube placed, and combination of almost 6+ months in the hospital. She was born with a cleft lip, which could not be repaired until she was a year old due to her heart complications. Our little angel is such a warrior, having been through so much pain and suffering in such a short period of time. Today she is a bright, strong and happy little girl. Our life doesn't come without its struggles, but Talia inspires me every day to better myself as both a mother and an individual, because we know our days are precious and a gift from God. We still have a long road ahead of us, with the upcoming fourth open heart and some cleft lip repair, but are optimistic about the road ahead and happy to have the hard part behind us.
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