PATIENT EDUCATION

Born with a broken heart these babies now grow up to live a normal life

Why we should pay more attention to Congenital Heart Defects

Congenital heart defects affect approximately one in 100 births every year in the United States and are the most common type of congenital disability. Congenital heart defects occur while the heart is still forming, before birth. Heart defects differ from heart disease; in that, a heart defect is an abnormality that affects the normal function of the heart or major blood vessels. Heart defects are conditions that persons live with throughout their lives.

While hearing the news of a child being born with a heart defect is upsetting, today, according to Dr. Robert Benton, Chief of Cardiology at Samaritan Hospital, the outlook that the patient will be able to live a normal life is promising. “You have to look back on history, more than 50 years ago, the dawn of congenital heart disease surgery began. Today we have a population of people known as GUC’s – Grown-Up with Congenital Heart Disease. These are people that had some disconnection that was repaired and they grow up to live a normal life span.”

An estimated 1 million children and 1.4 million adults in the United States are living with a CHD in 2010. There are at least 18 distinct types of congenital heart defects that are recognized. In some cases, surgery makes it possible to correct issues that were once believed to be untreatable. “In the 1950s, congenital heart disease surgery began at Johns Hopkins,” shared Dr. Benton. “This is when ‘blue babies,’ patients who had difficulty getting blood into the pulmonary circulation, were born blue. It’s called Tetralogy of Fallot (TOF).” This congenital heart condition is a combination of defects that result in impaired pulmonary blood flow and reduced oxygen levels in the blood.

The first concealed procedures came from that era, small shunts that would connect parts of the heart. Over the next several decades with the advent of cardiopulmonary bypass surgery and significant research, doctors created surgical procedures that corrected these defects. “You could turn an abnormal heart to a normal heart. Or, you could have a procedure that gave you a normal-ish heart and live a long life; we don’t know yet because some of these procedures have only been around for 30 years,” said Dr. Benton.

February 7th – 14th is Congenital Heart Defect Awareness week. Capital Cardiology Associates joins patients, families, physicians, health care workers, and volunteers across the country who advocate educating Americans of congenital heart defects, the most common and deadly type of congenital disability in the country. While the exact cause of most heart defects is not known, some factors impact a baby’s risk of being born with an error. “Genetics can be a factor,” said Dr. Benton. According to the American Heart Association, the chances that people with this genetic condition will pass it along to their child can be as high as 50 percent.

Dr. Benton explained the specific genetic condition for a very rare heart defect with less than 20,000 reported cases per year in the US. “For instance, Tetralogy of Fallot (TOF), that is genetic. You can see that in the mother and the child. If you are a woman with TOF, your fetus is not going to have the regular sonogram to look at the development of organs, you are going to a specialist for an echocardiogram that looks at the heart of a little baby which is the size of a peanut; it takes a very skilled eye to look at that. These specialists can diagnose a congenital defect before birth. It’s important to know because the whole setup is going to be different at delivery. Some issues have to be addressed, immediately, at birth.”

Some heart defects are hard to detect before birth and may not be discovered or diagnosed until adolescence or adulthood. “One of the most common things we will discover is bicuspid aortic valve (BAV), an aortic valve that only has two leaflets, instead of three,” said Dr. Benton. BAV is present in about 5% of male births and 2.5% of female births. This defect can go undetected before birth, as most people with a bicuspid aortic valve aren’t affected by valve problems until they’re adults and, some may not be detected until they’re older adults. A doctor would detect this defect by listening to your heartbeat with a stethoscope. If the doctor hears a murmur, they may order additional imaging tests to examine the function, blood flow, and structure of your heart. Treatment may include medications, valve replacement surgery, or valve repair.

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Every parent hopes and prays for a healthy baby. While genetics is a significant factor in the risk of congenital heart defects, there are preventative steps pregnant mothers can take to lower their baby’s risk. A Swedish study found that obese pregnant women are twice as likely to have babies with severe congenital heart defects. Researchers discovered that the more overweight or obese women are, the higher the risk of having a baby with a congenital heart defect. Obesity is generally considered the most important preventable risk factor for pregnancy complications.

Dr. Benton also cautioned women planning to become pregnant also limit toxins like alcohol, cigarette smoking, and exposure to certain medications. “If you have hypertension and you are considering getting pregnant, then you need to not be on those medicines when you get pregnant. Another medicine that can cause side effects during the early parts of pregnancy is Warfarin, Coumadin. If you have a mechanical valve and you’re a young woman who wants to get pregnant, you have to be ready for that and go on an injectable blood thinner called Heparin. The advice that most obstetricians would give most people would be to avoid toxins in your environment, avoid toxins you expose yourself to, and a eat healthy diet.”

Written by: Michael Arce, Marketing Coordinator, Capital Cardiology Associates
Any medical information published on this website is not intended as a substitute for informed medical advice, and you should not take any action before consulting with a healthcare professional.