Heart disease is the number one killer in Louisiana and in America. Heart disease does not discriminate against age, race or gender. Unfortunately, the killer isn’t easy to see. Heart disease is often silent, hidden and misunderstood. As a mom, it is hard to think about your little baby having heart trouble but for many New Orleans moms that is a hard reality.
The truth is that heart disease is not an old man’s disease like so many believe. Even the smallest hearts have big challenges. The number one birth defect in the United States is congenital cardiovascular defects, also known as congenital heart defects (CHD). The incidence of CHD ranges between 4 and 10 per 1,000 live births. Tragically, more than 1,600 of them do not live to celebrate their first birthday.
But there is still real reason for hope. Due to research by the American Heart Association more survive to adulthood, including many who formerly would have died. The prevalence of congenital cardiovascular defects has increased strikingly in both adults and children due to increased survival.
NOMB’s Courtney had no reason to expect anything but a healthy baby boy, and it seemed at first glance that this was the case. Jack was born in December 2009 at 8 lbs, 10 oz and seemed the picture of health. His pediatrician quickly realized, though, that he had a heart murmur. A heart ultrasound showed that Jack had a ventricular septal defect (VSD), or more simply, a hole in his heart. Jack seemed to thrive in his first couple months, and his parents were hopeful that his VSD might close on its own. However, at a cardiologist check-up when he was 2 months old, it was discovered that Jack’s VSD had led to a growth of muscle in his right ventricle, effectively leaving him with a double chambered right ventricle. This required open heart surgery which was performed when Jack was 3 months old. During the surgery, the muscle growth was removed and the original VSD (plus an additional one discovered in surgery) were closed.
Courtney recalls, “Jack’s first six months of life were defined by his heart defect. Now, at almost 3, it is hard to believe this healthy, active boy ever had any health challenges. There are several moments that will always be seared into my memory. The first was hearing for the first time that Jack had a serious heart defect that most likely would require surgery to repair. He was less than a day old and I remember feeling so helpless and also illogical guilt that I had failed this tiny baby in some way. We were lucky to have a few weeks to prepare for his surgery, and we had the invaluable support of our family. Still, it was indescribable to have to hand over your tiny baby to strangers for such a serious procedure. Our faith that Jack was in God’s hands definitely helped us get through his time in the hospital. In hindsight, I don’t know how we got through all the hard parts of watching him recover, but at the time, we were just so thankful that his surgery had gone successfully, that we focused on just getting through each day toward complete recovery. As you can imagine, we were beyond thrilled and relieved to know that Jack’s sister Cora was born with a healthy heart.”
When New Orleans mom, Susan Aucoin, was 29 weeks pregnant she was told that she had twin to twin transfusion and that one of my twins would have to have open heart surgery soon after birth because he had transposition of the great vessels. That baby was Henry. This was devastating news to her family. To say that she was scared is an understatement.
On April 27, 2009 Henry and Benjamin were born. On May 15 Henry had his first open heart surgery. To see your newborn whisked away to have open heart surgery is terrifying, and it was something she hoped she would never have to see again. Henry was the smallest baby that his surgeons had ever done this particular surgery on weighing a mere 2 kilos (4 1/2 pounds). His surgery was successful. Susan was finally able to hold him for the first time and he was able to meet his big sister Emily on June 28. As a parent, this was one of the happiest moments of her life. On July 12, Henry was finally released from the CICU and he was able to be re-united with his twin Benjamin and on July 13, the family was finally able to bring him home. It was a long and rocky road but Henry did much better than anyone anticipated.
Later that year Henry was diagnosed with supra pulmonary stenosis. His parents found out at Thanksgiving that he needed another surgery. On January 5, 2010 Henry had his second open heart surgery, and it was also a success. His recovery was tough but much better than the first. As of today, Henry is a vibrant, active, normal 3 1/2 year old boy. He is scheduled to go back to Children’s Hospital in November to visit the cath lab which will hopefully prolog or prevent any future surgeries.
New Orleans grandmother, Lisa Piazza, is an advocate for heart healthy because of her grandson, Kameron Piazza, who was born with a heart condition called Tetralogy of Fallot, which is a Congenital Heart Defect that causes low oxygen levels in the blood. The classic form includes the four defects of the heart and its major blood vessels. Kameron was diagnosed the day after he was born and has had two open heart surgeries since he was born. He is just about to turn one and is now doing great.
Join the Fight
These little NOLA babies are just a few of the stories of success that are made possible through the research done by the American Heart Association.
Each day the American Heart Association is working to understand and prevent heart disease and CHD. The New Orleans American Heart Association will host the annual New Orleans Heart Walk on November 17 at Shelter 10 in Audubon Park. All funds raised will stay right here in New Orleans and fund groundbreaking research happening at our local hospitals.