Summer Travel Tips from the Adult Congenital Heart Association

There are so many things to do when preparing for a trip, but add a congenital heart defect (CHD) to the equation and the to-do list grows. To help alleviate some of this stress, the Adult Congenital Heart Association (ACHA) website features useful information for CHD patients to consider when planning travel, such as travel insurance, the destination’s climate, preventing blood clots and exhaustion, and travelling with medications, a pacemaker or ICD. The website also offers tips for going on a cruise or what to do upon arrival at a vacation destination. In addition, the ACHA offers the ACHD Travel Directory, which is designed to help patients find emergency adult CHD care when traveling.

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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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Fewer than 50% of adolescents with heart problems are prepared for transition to adult care

The article “Preparing adolescents with heart problems for transition to adult care, 2009-2010 National Survey of Children with Special Health Care Needs” was published online by Congenital Heart Disease on Friday, May 19. The authors recognize the increased morbidity and mortality to adolescents with heart problems who fail to transfer to adult care. Using parent-reported data on 12- to 17-year-olds from the 2009–2010 National Survey of Children with Special Healthcare Needs, the frequency and content of transition planning discussions was assessed. Authors conclude that less than half of adolescents with heart problems had parents who discussed their child’s transition with providers, which could be contributing to the large percentage of CHD patients who do not successfully transfer to adult care. The article is available at http://dx.doi.org/10.1111/chd.12476.

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Jimmy Kimmel’s Heart Child

In April, Jimmy and his wife Molly welcomed their second child together, William ‘Billy’ Kimmel. At three days old, Billy had successful open heart surgery at Children’s Hospital Los Angeles and is now home with his family. Jimmy opens up about his son’s birth and health complications and thanks the team at Children’s Hospital Los Angeles where Billy and so many other kids get such wonderful care. He also reinforced the need for health insurance for all; noting that only a few years ago a congenital heart defect would have been considered a pre-existing condition.

 The CHPHC thanks Jimmy Kimmel for sharing his story and whishes the entire family well as they begin their CHD journey.

Follow on Twitter: https://twitter.com/TheCHPHC/status/859436194446413824

Watch video: https://youtu.be/MmWWoMcGmo0

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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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Mended Little HeartGuide, a Comprehensive Guidebook for Families of Kids with Congenital Heart Defects

The digital Mended Little HeartGuide was developed to empower families to feel confident as they care for their child with congenital heart disease. The CHD journey can be frightening and challenging, but parents and caregivers can do very well if they have the right information and resources. Mended Little Hearts and St. Jude Medical partnered to create a one-of-a-kind, digital resource guide for parents and caregivers of children with congenital heart disease. Medical professionals and parents worked together on this guide to provide accurate and honest information that addresses the tough feelings, questions and concerns parents and caregivers may have.

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Balancing Parenting and your Congenital Heart Defect

A key issue in parenting when you have congenital heart defect (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.

CHD can be unpredictable, but so can your child’s needs. When CHD overrules parenthood, call friends, family members or a sitter to help. Parenting changes with older children, but it’s still important to ask others for support.

It’s also important to do whatever it takes to find time to relax. Here are some simple ways to make relaxation a top priority:

  • Visit with friends
  • Go see a movie
  • Meditate
  • Take time to read

Your parenting style may be different from your sister’s or your friend’s, but that doesn’t mean you’re not a great parent. Maintaining realistic expectations can make meeting the challenges of parenting with CHD easier 

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

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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 conqueringchd.org 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: http://disclosures.acc.org/

An ACC.org username is required and can be created here.

Registered users can retrieve their password electronically, or email resource@acc.org with questions.

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