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 www.mendedlittlehearts.org.
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 http://www.nbdpn.org/bdpm.php#PreventToProtect
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 HealthyChildren.org Website. Follow this conversation on Twitter at #CHDCare4Life.
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 HealthyChildren.org 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 www.chphc.org. 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.
“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.
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.
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.
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.
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.
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.