Reproductive health for young women with congenital heart defects


When you have a congenital heart defect (CHD), choosing the right type of birth control can mean the difference between protecting your heart and developing serious health complications.


Many oral birth control medications contain a hormone called estrogen, which can increase a person’s chance of having a stroke or developing blood clots. Birth control with estrogen is not recommended if you are at risk of forming blood clots. This is especially the case if you are a CHD patient with an artificial heart valve or you have had a Fontan operation.

If you are at risk of developing blood clots, you might want to consider one of the following birth control methods:


  • Birth control that contains only the hormone progestin. It is available as an oral medication, an implant, an injection or an intrauterine device (IUD).
  • Barrier methods, such as condoms and diaphragms.

If you have been told you could have a very high-risk pregnancy, be sure to use a reliable form of birth control, such as an IUD, or even two forms of birth control. And if you have decided never to become pregnant, you or your partner might want to consider permanent sterilization. This does not mean that you cannot have a family; talk to your health care providers about other options for having a family, including surrogacy or adoption.

It is always best to talk to your cardiologist and gynecologist about the different types of birth control and which form is recommended for you. Additional information about contraception and reproductive health for young women living with a CHD is available from the Congenital Heart Public Health Consortium through the Website.

This article was developed by the Congenital Heart Public Health Consortium (CHPHC) as part of a continuing series on how women with a congenital heart defect (CHD) can manage issues related to reproduction and parenting. For more information or to read the other topics in the series, please visit the Congenital Public Health Consortium website

The CHPHC is a group of organizations who have united their resources in an effort to prevent congenital heart defects and improve the lives of those adults and children affected by the disease. The CHPHC is supported by the cooperative agreement number, 5 U38 OT000183, between the American Academy of Pediatrics and the Centers for Disease Control and Prevention. Additional information about the CHPHC is available online at The publications and other output of the CHPHC are solely the responsibility of the authors and do not necessarily represent the official views of the American Academy of Pediatrics, Centers for Disease Control and Prevention or the Department of Health and Human Services.


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Help parents form positive parent-child relationships

Essentials for Parenting Toddlers and Preschoolers” is a free, online resource developed by the CDC to help parents learn skills that form the foundation of a positive parent-child relationship. Skills focus on encouraging good behavior, while decreasing misbehavior using proven strategies.


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Closing the Gaps in Public Health Knowledge About Congenital Heart Defects Across the Lifespan

In the article “Databases for Congenital Heart Public Health Studies Across the Lifespan (JAHA, published online October, 26, 2016), the authors representing the Congenital Heart Public Health Consortium (CHPHC) advocate that anyone planning studies to address public health knowledge gaps may benefit from an understanding of the complex constellation of databases with congenital heart defect (CHD) data. The article provides a summary of the database categories with examples. Included are administrative healthcare databases, surveillance, clinical databases or registries, as well as surveys and vital records. Also discussed are opportunities to leverage databases through linkage as an important tool to understanding long-term and longitudinal outcomes for persons with CHD. Share your perspective on this topic by adding to the discussion on CHPHC Collaborate.

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New Online Library of Milestones in Action for Parents & Caregivers

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) Learn the Signs. Act Early program just released a new online library of over 250 photos and videos showcasing early childhood developmental milestones from 2 months to 5 years of age. This free resource will help parents and other caregivers recognize milestones in their own children. The library can also be used to train other child care providers to recognize these important signs of early development.

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Hope as Therapy: How Does Peer Support for Patients Affect Outcomes?

Through the article “Hope as Therapy: How Does Peer Support for Patients Affect Outcomes?” (Cardiovascular Business, October 4, 2016) Mended Hearts Executive Director, Michele Packard-Milam, CAE, discusses the powerful and practical opportunities that peer support models present for injecting hope into healthcare. Packard-Milam presents peer support as an effective approach for patient centered medical homes to quality improvements regarding patient engagement and shared decision making.

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AAP Issues Recommendations on Informed Consent in Pediatric Health Care

The American Academy of Pediatrics released a policy statement and technical report in Pediatrics recommending pediatricians use age-appropriate discussions to involve preteen and teen patients in medical decision-making; be familiar with state laws in case of treatment refusals; engage in information sharing with patients and families before obtaining informed consents or assents; and question and contest medical decisions that may cause significant health risks to patients. “The more we involve [patients] in medical decision-making, the better they’ll be at medical decision-making and the stronger they’ll be in terms of partnering with their physicians as they become adults,” said Dr. Aviva Katz, statement and report lead author.

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Access to Care: Are We Ready for the Surge in CHD Survivors?

The CHPHC has developed a new factsheet regarding access to care for congenital heart defect (CHD) survivors. CHD represents a medical challenge that spans the life of a patient from birth through adulthood. With increased survival, the number of adults with CHD grows annually into the millions. Access to and maintaining lifelong care is becoming an increasing problem for this growing population. The access to care factsheet summarizes issues including the challenges to the system when specialty care is not sustained, reasons why young adults and adults fall out of care, and lastly, public health opportunities for consideration.

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New Study Estimates the Number of People with Congenital Heart Defects Living in the United States

Thanks to advancements in medical and surgical care, more people are living longer with congenital heart defects (CHD) than ever before. As people live longer, more of them require specialized ongoing care. However, there is no current information about the number of people currently living with CHD in the United States. In this study, researchers estimated that there were about 2.4 million people (1.4 million adults and 1 million children) living with CHD in the United States in 2010. This study highlights the need for improved planning of health services to meet the needs of an ever growing population (U.S. adults living with CHD) and development of a system to better track the number of people across all ages living with CHD in the United States. We invite you to read a summary of the key findings from this paper and to read the article’s scientific summary.

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Balancing Parenting and Congenital Heart Disease

A key issue in parenting when you have congenital heart disease (CHD) is being able to balance the day-to-day demands of being a parent and living with CHD. Some days it may be hard to figure out who to put first – your child or yourself. However as hard as it may be, it’s important to take care of your own physical and emotional needs first. As a parent this may not sound “right,” but everyone will benefit in the long run if you are in better health and have more energy. Comment on the parenting discussion topics posted by CHD parents Paula Miller (CHD survivor and mom), Bill Foley (CHD dad) and Jodi Lemacks (CHD mom) on the CHPHC Collaborate Web site (login required).

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Nick’s Story on Fox5 news


Check out Nick’s story on Fox5 news



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