Saving hearts from birth to beyond

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Holes in your heart. Blocked valves and narrow arteries. The fact is, if you were born 40 years ago with one of these problems, you probably would not live to be a teenager.

Today, congenital heart defects, or CHDs, are still the most common birth defects. Eight in 1,000 newborns are diagnosed with it.

For the first time, more and more are living into their 30s, 40s and 50s, and modern medicine is giving these children hope.

You can bet Camden Thuringe's mom and dad always have his back.

He's been a regular of pediatric cardiologist Dr. Abhay Divekar since he was just hours old.

"He was born and he was really blue," recalled Jenny Thuringe, Camden's mom.

"The right lower chamber of the heart going to the lungs was completely blocked," Divekar remembered.

Divekar used radio frequency energy to create a pathway, saving Camden's life.

The Thuringes followed Divekar from a hospital in Iowa City to a hospital in Kansas City, and then to Denver, where he works now. On this day, it took them 12 hours to drive from Kansas.

"I'd rather stay with one doctor where he knows everything inside of his heart," Jenny Thuringe said.

Meanwhile, it took Veronica Dean 40 years to find the right doctor.

"I had surgery at 5 months old," she said.

Born missing a ventricle, Dean was told no sports, don't push it.

"I've always had the mentality of I'm limited," she said.

Dean saw doctors without a history of treating teens or adults with CHD.

"Adult cardiologists are good in cardiology, but that spectrum of heart disease is very different," Divekar said.

Divekar was one of the first in the country to be certified as a pediatric and adult congenital heart disease cardiologist.

"He gave me a new outlook at life," Dean said of Divekar.

And Camden will need his heart valve replaced someday so he can continue doing what he loves – things like playing football and basketball.

"He's still perfect to us, but he just has a broken heart," Jenny Thuringe said.

But don't tell him that! Camden is full of heart.

Just four years ago, the American Board of Internal Medicine recognized the need for a subspecialty of adult congenital heart disease and administered the first board certification.

RESEARCH SUMMARY
SAVING HEARTS FROM BIRTH TO BEYOND
REPORT #2707

BACKGROUND: Congenital heart defects (CHDs) are problems with the heart's structure that are present at birth. Examples include holes in the inside walls of the heart and narrowed or leaky valves. In more severe forms of CHDs, blood vessels or heart chambers may be missing, poorly formed, and/or in the wrong place. CHDs are the most common birth defects and occur in almost 1% of births. An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year, and nearly 40,000 infants in the U.S. are born each year with CHDs. Approximately two to three million individuals are thought to be living in the U.S. with CHDs. Only 15-20% of all CHDs are related to known genetic conditions, and most are thought to be caused by a combination of genes and other risk factors, such as environmental exposures and maternal conditions. Because the heart is formed so early in pregnancy, the damage may occur before most women know they are pregnant. (Source: https://mendedhearts.org/story/chd-facts-and-statistics/)

RISK FACTORS: Most CHDs result from problems early in your child's heart development, the cause of which is unknown. Having rubella during pregnancy can cause problems in your baby's heart development. However, your doctor can test you for immunity to this viral disease before pregnancy and vaccinate you against it. You can reduce the risk of CHDs by carefully controlling your diabetes before attempting to conceive and during pregnancy. Gestational diabetes generally doesn't increase your baby's risk of developing a heart defect. Medications known to increase the risk of CHDs include thalidomide (Thalomid), angiotensin-converting enzyme (ACE) inhibitors, statins, the acne medication isotretinoin (Absorica, Amnesteem, Claravis) and lithium. Avoid alcohol and smoking during pregnancy because these increase the risk of CHDs. Finally, CHDs sometimes run in families and may be associated with a genetic syndrome. Many children with Down syndrome, which is caused by an extra 21st chromosome (trisomy 21), have heart defects. A missing piece (deletion) of genetic material on chromosome 22 also causes heart defects. Genetic testing can detect such disorders during fetal development. (Source: https://www.mayoclinic.org/diseases-conditions/congenital-heart-defects-children/symptoms-causes/syc-20350074)

ADVANCEMENTS IN CHD CARE: Advancements in surgical and non-surgical care for congenital heart conditions are allowing children and adults with the disease to live longer, healthier lives. "Now that we have the ability to examine the effects of congenital heart disease at the molecular level, we are developing new treatments that target those changes," University of Minnesota Health Pediatric Cardiologist Jamie Lohr, MD, said. The field is also evolving in the direction of mechanical device support that helps survivors as they age. University of Minnesota Health Heart Care experts are leading the way in this area of research, particularly with ventricular assist devices (VAD). These devices help a person's heart work better, improving quality of life or serving as a bridge to a heart transplant. New medicines are continually being developed as well as ways to adapt adult therapies for use with younger patients. The university has also developed a comprehensive care program that begins when a patient is a teenager and continues as they transition into independence and adulthood. (Source: https://www.mhealth.org/blog/)