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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The CHPHC celebrates parents with lives affected by CHD

In honor of Mother’s Day the Congenital Heart Public Health Consortium recognizes the unique joys, sorrows, challenges and opportunities that come to a family with living with a congenital heart defect (CHD). Read the messages that CHPHC members and CHD moms Paula Miller and Jodi Lemacks (login required) shared with parents this past weekend. Answers to questions frequently asked by parents are also available as short video vignettes on the CHPHC.org website.

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Parenting a Child with CHD

In honor of Mother’s Day the Congenital Heart Public Health Consortium recognizes the unique joys, sorrows, challenges and opportunities that come to a family with living with a congenital heart defect (CHD). The CHPHC offers the message below to all CHD moms. Thank you for all that you do for your family and for yourself.
Sent on behalf of Jodi Lemacks
and the CHPHC Communication Committee
Being a parent of any child is not easy, but parenting a child with congenital heart disease (CHD) poses unique challenges. Parents are often thrust into a world of unknowns; they are required to learn “normal” parenting skills in addition to learning new medical terms, how to use medical equipment, and what to do in an emergency. Worry and fear are often present in all new parents, but parents of children with CHD often feel that they experience more than their share of worry and fear. In fact, when Mended Little Hearts, a national parent support organization, asked on its Facebook page how often parents think about their child’s CHD, out of the 184 that responded, 93% stated that they thought about their child’s CHD every single day.
Obsessively thinking about CHD poses two major problems: 1) parents have too much anxiety and stress; and 2) kids, inevitably, feel some of that stress. So what can parents do. First, it is vitally important to find ways to take care of yourself—eating right, exercising, taking breaks, and getting enough rest. Many parents feel that they are unable to do these things when caring for a new baby with special needs; however, even 5-10 minute increments of rest, exercise, and quiet time can be beneficial for releasing some stress and tension. Second, it is important to avoid letting CHD define your life and your family’s lives. This is difficult with regular medical appointments, medications, and issues that arise, but find other things to focus on so that your family isn’t centered around your child’s CHD.
To reduce stress in children with CHD and build a positive self-esteem, it is important that you are careful about how you talk about CHD. If you say you hate CHD and see CHD as bad or evil, your child will feel that a part of him or her is bad. Clearly, this disease is unfair, and we would much rather our kids didn’t have it, but they do. Another thing you can do is focus on all of the things your child and family CAN do instead of what they can’t. It’s easy to look at what everyone in the family lost, but find the things you have gained or that you still can do instead. Often parents and siblings gain more compassion and acceptance of others because they had to deal with CHD. It not only changes families in bad ways, but in good ways too.
The best piece of advice for parents of children with CHD (and one that is often hard to follow) is to stay in the present moment and take things one moment at a time. Getting stuck in the trauma of the past or fearing the future doesn’t help anyone. Focus on hear and know, and what is happening and what you can do in this very moment. Remember, the present is a gift.
Find answers to frequently asked questions on the CHPHC.org website.
Jodi Lemacks, Esq.
Mended Little Hearts, National Program Director
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Heart Transplant Party-25 years and counting

DSC_0717Nick doctors and nurse and heart friend

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25 Years with a Heart Transplant

DSC_0683Nick and Dr. Kirk Kanter is heart surgeon.

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Congenital Heart Disease Clinic and Provider Directory

The congenital heart disease (CHD) clinic directory is an online directory on American College of Cardiology’s (ACC) CardioSmart Website. The directory is designed to help patients, families and providers find specialty CHD care. With nearly 200 CHD centers and practices providing pediatric cardiology or specialty adult CHD services listed, it should be easier to connect with the right provider. Users can search providers by name, center, location or specialty — and easily determine if their chosen provider is a Fellow of the ACC.

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