Benny was born on July 18, 2014 at 37 weeks with a Congenital Heart Defect. He is our second blessing and little miracle baby. His diagnosis is Double Outlet Right Ventricle with Sub-aortic Ventricular Septical Defect, Supraventricular Tachycardia, Dextrocardia, Heterotaxy with Asplenia, Malrotation of the intestines and Wolff-Parkinson-White Syndrome. In simple terms, Benny had a large hole between the both ventricles, his aorta and pulmonary artery is on the right ventricle, he can go into episodes where his heart can beat up to 260 beats per minute, his heart and stomach are on the right side of his body, his intestines are not rotated properly and can twist and he has no spleen. Since he has no spleen, Benny needs to take antibiotics twice a day for the rest of his life and we need to be extra careful he doesn't get sick so he doesn't end up in the ER.
How did all this happen you ask? Well, no one really knows yet. The genetics Doctors are still doing studies to research if it was genetics or just something random that happened. Throughout my entire pregnancy I was super healthy and did everything I was supposed to. We didn’t find all this out until I was 35 weeks pregnant. I felt like something wasn't right and had gone to the Doctor, who then sent me to the hospital, who then confirmed that he was in and had a hole in his heart. The local hospital couldn’t tell us much since they were limited on testing so they decided to send me to Barnes Jewish Hospital in St. Louis MO. They ended up flying me up there the same night and testing began the very next morning.
After several tests, ultrasounds and EKGs and ECHOs later, all was confirmed. We were devastated that our baby was going to have to go though some extreme challenges right as he was born, but all the Doctors were hopeful. We owe so much and are so grateful to have a team of wonderful doctors. Benny had to stay in the hospital in St. Louis for a month and a half before we could bring him home. While at the hospital, Benny had to get a PA band around one of his pulmonary artery to slow down the blood flow into his lungs. That was a temporary fix until he received his open heart surgery to repair the hole in his heart in May 5, 2015. We've had a few other scares where we've had to rush him to the ER in St. Louis because of his SVT (fast heartbeat). During one of his episodes, it took 10 hours to get him back to normal heart rhythm. The doctors had to shock his heart 3 times and drain fluid from around his heart.
When I became a heart mom I knew I had to do several things for my son Benny, one of which was be an advocate for him and for Congenital Heart Defect Awareness. Many people are not quite familiar about Congenital Heart Defects. They don't ...know that Congenital Heart Defects are the most common defects in the U.S., 1 in 100 babies are born with it. Approximately 40,000 babies are born in the U.S. with a CHD each year. Or that CHD's are the leading cause of infant deaths in the United States. Also, Congenital Heart Defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
One of my many jobs as a heart mom is to share the information about CHDs. The more awareness there is, the more fundraising and funding there is. And the more funding, the more research there is to make better medicines with less side effects, more research to make surgeries less risky and hopefully find a cure and prevention one day.
Our Benny is a tough fighter and will continue to fight. Benny is why we raise awareness. Join Benny in his fight against Heart Disease and Stroke at this year’s Heart Walk. Register Here