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Dec 06, 2013

Blood Clots a Major Concern for Children and Adults with CHD

American Heart Association releases statement with recommendations for preventing blood clots in patients with congenital heart disease.

Blood clots pose one of the greatest health threats to patients with congenital heart disease, according to a recent statement from the American Heart Association. Patients with heart conditions, especially children, are at increased risk for blood clots and helping prevent clots in these patients is a must. Once formed, blood clots can travel to the heart or brain and result in heart attack or stroke, which can be life-threatening. So what can be done to help reduce risk of complications in patients with congenital heart disease?

After reviewing the latest research, experts provided recommendations for reducing risk of blood clots in congenital heart disease patients, which were published in the American Heart Association’s journal Circulation. In this paper, authors specified which treatments should always be performed or administered to reduce risk and which treatments or procedures may actually be harmful. They also described treatments that we’re less sure of but may be considered in certain situations. In total, experts put together 140 recommendations to help educate healthcare providers and provide them with guidance regarding best practices. Ultimately, the goal of treatments is maintaining a fine balance between reducing risk for clotting and thinning the blood too much that it could promote bleeding, in order to reduce risk for complications.

In addition to treatment recommendations, authors also encourage further research on the topic, since evidence is sparse. Congenital heart disease is rarer than other heart conditions, which can make it more difficult to study. Parents may also be hesitant to enroll their child in research studies, especially if painful procedures like blood draws are involved. Despite these hurdles, authors hope that their paper will spark future research on the topic, which is desperately needed to improve outcomes for patients with congenital heart disease. Children are a uniquely vulnerable population when it comes to heart disease and the more we understand about treatment and prevention, the better outcomes we can achieve.

Questions for You to Consider

  • What are congenital heart defects?
  • “Congenital” means present from birth. So, congenital heart defects refers to a number of different conditions that can occur when a baby’s heart is forming or at birth. As a result, the heart—or the major vessels in and around the heart—may not develop or work the way they should.

    Congenital heart defects are the most common type of birth defect. Roughly 8 of every 1,000 babies are born with some sort of structural defect in their hearts. These problems cause more deaths in the first year of life than any other birth defects. Some examples are atrial septal defect, coarctation of the aorta, and aortic stenosis.

    But, there is good news. More babies are surviving than ever before thanks to advances in treating and correcting many of these problems. Although most defects are found during pregnancy by ultrasound or in early childhood, some defects aren’t discovered until adulthood. About 1 million adults are living with congenital heart disease.

  • How are congenital heart defects treated?
  • If you or your child have a heart defect, it can be very scary. But there are a number of treatment options depending on the type of defect and the symptoms. It’s important to find a cardiologist who specializes in congenital heart defects and get support. Learn more about treatment.


Robby's Story: Tetralogy of Fallot

Robby Motta was born with Tetralogy of Fallot—four defects within his heart. Eight years later, Robby is an active second-grader.

Deborah Flaherty-Kizer is CardioSmart

Deborah Flaherty-Kizer was born with a heart defect. Instead of allowing her condition to limit her, she regularly challenges herself physically and serves as a mentor to other heart patients.

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When he was 12 years old, Jacob Burris was diagnosed with a congenital heart defect. Today, he is spreading the word about the importance of checking blood pressure and raising awareness about CHDs.

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Born with an atrial septal defect, Rudy Wilson Galdonik learned early on that while she couldn't control her physical limitations, she could control how she approached her heart condition. 

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