Guided Questions Tool—Important Questions for Families to Ask the Cardiac Team

Thanks to new and better treatments children with a congenital heart defect (CHD) have better chances of survival. The Pediatric Congenital Heart Association has developed a series of questions that families can use when talking with their cardiac care team. The guided questions tool is available online. Visit for more information about CHD and links to additional resources.

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Congenital Heart Defect Awareness Week

February 7-14, 2017 is Congenital Heart Defect Awareness Week!

Congenital Heart Defect Awareness Week promotes awareness about congenital heart defects (CHDs). CHDs are the most common birth defect – affecting nearly one in 100 births every year in the United States. Heart defects are lifelong conditions. About 1 million children and 1.4 million adults in the United States were living with a CHD in 2010.

Join CDC in this nationwide effort to raise awareness of heart defects, their causes, and their impact.

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Comments Being Accepted Regarding Candidate Metrics for Young Adults with CHD

The American College of Cardiology’s Adult Congenital and Pediatric Cardiology Section is inviting congenital heart disease community members to comment on two proposed candidate metrics aimed at ensuring young adults with congenital heart disease are appropriately guided into life- long specialized care.   The quality metrics were developed under the auspices of Keila Lopez, MD and the Adult Congenital Heart Disease team of the ACC’s ACPC Quality Working Group.  Ariane Marelli, MD, MPH, FACC and Jeffrey Anderson, MD, MBA, FACC co-chair the ACPC Quality Working Group.

 The two proposed candidate metrics for Transition or Transfer of Young Adult patients with Congenital Heart Disease are below:

 The ACPC site with the quality metrics and comment survey is available here

 Comments provided will be shared with members on the Adult Congenital Heart Disease Quality Metrics Team as part of the process to refine the metrics before submission to the ACPC Council for approval.  Please update your disclosure and provide comments by February 15, 2017.

 In accordance with the 2008 ACC/AHA Classification Care Metrics: Performance Measures and Quality Metrics (Bonow R, et al, JACC, vol 52, No.24, pp. 2113- 2117), the proposed quality metrics are being proposed for quality metrics and designated for use in internal quality improvement programs only.  It is not appropriate for any other use, e.g., pay for performance, physician ranking, or public reporting programs.


ACC’s disclosure system may be accessed at:

An username is required and can be created here.

Registered users can retrieve their password electronically, or email with questions.

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New AHA guidance on managing pregnancy in CHD patients

The American Heart Association published the scientific statement “Management of Pregnancy in Patients with Complex Congenital Heart Disease” (Circulation, 2017). The statement acknowledges that for many women with complex congenital heart disease, carrying a pregnancy carries a moderate to high risk for both the mother and her fetus. The authors also reinforce the importance that all practitioners who will be manage the care for women with a CHD have current information not only on preconception counseling and diagnostic evaluation to determine maternal and fetal risk but also on how to manage them once they are pregnant and when to refer them to a regional center with

expertise in pregnancy management.

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Reproductive health for young women with congenital heart defects

Topic #2 of 6: Planning a Healthy Pregnancy (sharable version attached)

Women living with a congenital heart defect (CHD) can have healthy pregnancies. Plan ahead and follow these steps.

  • See health care professionals who treat pregnant women with CHDs. You should have a congenital cardiologist, a high-risk obstetrician, an anesthesiologist and a social worker on your medical team.
  • Go to your appointments. Your cardiology health care professionals will tell you how often appointments with them are needed. Most women with a CHD see their congenital cardiologist at least once each trimester.
  • Take vitamins with folic acid, eat healthy foods, exercise, get enough rest, don’t smoke, and don’t drink alcohol. Also, only take drugs prescribed by your doctors.

During pregnancy, the congenital cardiologist may want to perform special tests.

  • Most women with a CHD have ultrasounds of their heart, called “echocardiograms.” These are usually done early in the pregnancy and in the third trimester.
  • An ultrasound – fetal echocardiogram – of the baby’s heart should also be performed around 18-20 weeks of pregnancy to check for a CHD in the baby.

During the pregnancy, plans for labor and delivery will be made.

  • The anesthesiologist will talk with you about pain control options because some of these medicines can affect the heart rate and blood pressure.
  • A vaginal delivery is recommended for most women with a CHD but this is an individual decision and varies depending on the patient and the type of CHD. The obstetrician and congenital cardiologist will let you know what type of delivery will be recommended for you.

Additional information about reproductive health for (young) women living with a CHD is available from the Congenital Heart Public Health Consortium through the Website.

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CDC: Birth defect-related hospitalization in US cost $23B in 2013

CDC researchers found that the cost of hospitalizations linked to birth defects in the US totaled $22.9 billion or 5.2% of total health care costs in 2013, while representing only 3% of all hospitalizations. The findings were published in the agency’s Morbidity and Mortality Weekly Report. Costs were particularly high for hospitalizations related to congenital heart defects, which cost more than $6 billion in 2013. Key findings are summarized on the CDC website.

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Birth Defects

Birth defects are the leading cause of infant death in the United States, accounting for about 1 in 5 infant deaths. In this study, researchers looked at the number of infant deaths related to birth defects per 1,000 live births for infants whose deliveries were paid by Medicaid or private health insurance. CDC researchers estimated that approximately 12 infant deaths related to birth defects occurred for every 10,000 babies born in the United States from 2011-2013.

Death rates related to birth defects were higher for babies whose deliveries were paid by Medicaid compared to private insurance. Further study is needed to identify the underlying reasons for these differences. Strategies to ensure that all pregnant women and their infants have access to high quality health care might reduce the difference in infant mortality between deliveries paid by Medicaid and those paid by private insurance. We invite you to read the full article.

 ·        The three most common categories of birth defects listed as a cause of death: central nervous system (CNS) defects, congenital heart defects (CHD) and chromosomal abnormalities.

·        Approximately 15% of all infant deaths and 70% of infant mortality attributable to birth defects (IMBD) occurred in the neonatal period. CNS defects, CHD, and chromosomal abnormalities accounted for 57% of neonatal and 76% of postneonatal IMBD.

·        Among preterm births, postneonatal mortality for deliveries covered by Medicaid was 40% higher for CHD and 81% higher for chromosomal abnormalities, compared with those covered by private insurance.

 You can find the Morbidity and Mortality Weekly Report (MMWR) article on this subject matter by clicking on:

What You Can Do

Spread the word about this study! We encourage you to share these links with your colleagues and friends.  Feel free to post them on your own home page as well.  Please share on your social media channels or share/retweet/favorite from @CDC_NCBDDD.

For More Information:

Birth Defects:

This research was done in collaboration with The March of Dimes. We thank them for their continued support and partnership.

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Mended Little Hearts: Rock Your Scar Contest

Get your cameras out because for the fourth year in a row, Mended Little Hearts is hosting its Rock Your Scar (#RockYourScar) photo contest and awareness campaign. For many teens and tweens, it is the very first time they have seen other teens and tweens just like them, and it makes them feel less different and alone.  No physical scars are required—just show how you are embracing your CHD and not letting it limit or define you.  If you don’t want to enter the contest, you can still post your pictures to Mended Little Hearts’ Facebook event and create greater awareness.  Photos in the contest will be judged by a selected panel on quality, creativity, originality and demonstrating the theme. To enter, or for more details, visit

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January is Birth Defects Prevention Month

Birth defects are common, costly, and critical. Every 4 ½ minutes a baby is born with a major birth defect in the United States. Become an active participant in National Birth Defects Prevention Month by joining the nationwide effort to raise awareness of birth defects, their causes and their impact.

Infections during pregnancy can hurt both mothers and their babies. We encourage all women to make healthy choices and learn different strategies to prevent infections during pregnancy to help lower their risk of having a baby born with a birth defect.  This year we are encouraging all women to prevent infections to protect their babies by observing the following guidelines:


o   Properly prepare food.

o   Talk to your healthcare provider.

o   Protect yourself from animals and insects known to carry diseases such as Zika virus.

o   Maintain good hygiene.

Women and their loved ones can participate in these strategies and take these important steps toward a healthy pregnancy.  Share your own tips for a healthy pregnancy using #Prevent2Protect on social media. Learn more at

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Reproductive health for young women with congenital heart defects

Topic #2 of 6: Preconception Counseling (sharable version attached)

Pregnancy is hard on the heart. However, most women with a congenital heart defect (CHD) are able to have healthy pregnancies if they choose. If you have a CHD and are thinking of having a baby, make an appointment first with a congenital cardiologist who treats adults with CHDs. The congenital cardiologist can help you determine if pregnancy is a safe option for you.

It will be important to tell the congenital cardiologist about any cardiac symptoms you have experienced. These include chest pain or feeling out of breath, tired or dizzy. You should also tell the doctor if you have felt heart palpitations that might make your heart feel like it is pounding, fluttering or beating too fast.

You will probably receive an echocardiogram – an ultrasound of the heart – to look for any heart problems. Some problems can be treated before becoming pregnant.

 Occasionally, congenital cardiologists have to tell their patients that becoming pregnant would be very high risk for their heart or for the baby. If this happens to you, your doctors can help you and your partner understand the risks and learn about other possible choices for having a family such as surrogacy or adoption.

 If your congenital cardiologist gives you the okay to become pregnant, you should consider the baby’s health, too. Babies of parents with a CHD are more likely to be born with a CHD. A genetic counselor or geneticist can discuss testing and discuss the risks of your child having a CHD. Additional information about preconception counseling and reproductive health for young women living with a CHD is available from the Congenital Heart Public Health Consortium through the Website. Follow this conversation on Twitter at #CHDCare4Life.

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