Collaboration for Change

ACC CV Summit

The American College of Cardiology recently hosted a Summit for providers in leadership positions to share information to improve their practice. PCHA was privileged to join Sisters By Heart in the opportunity to help educate these same amazing providers about building stronger relationships with their patients and parents through transparency and empathy.  We experienced an incredibly positive response to the patient education tool we are developing called “Suggested Questions.”  This tool, being designed collaboratively with patients and doctors, not only will empower patients by providing them with questions to ask their medical team that they may never have thought of, but in turn is educating the doctors about what parents need to know about the journey they are on.  This tool is still in draft stage and will be available for public comment in the next few weeks!

Medical Advisory Board

Through Collaboration – we will Conquer CHD.

We are thrilled that we have succeeded in bringing together some of the greatest medical professionals in the field to serve on our medical advisory board.  These dedicated folks meet monthly, providing insight, direction and expertise to support the programming of PCHA.  We are so grateful!!

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Brad Marino, MD, MPP, MSCE – Lurie Children’s Hospital

Co-Chair

 

 

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Amy Basken, MS – Pediatric Congenital Heart Association

Staff Co-Chair

 

 

 

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Jonathan Byrnes, MD – Cincinnati Children’s Hospital

 

 

 

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Michelle Gurvitz, MD – Boston Children’s Hospital

 

 

 

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Dunbar Ivy, MD – Children’s Hospital Colorado

 

 

 

Jeff Jacobs

 

Jeffrey P. Jacobs, MD – All Children’s Hospital

 

 

 

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Kathy Jenkins, MD, MPH – Boston Children’s Hospital

 

 

 

Dr. Lantin

 

Regina Lantin, MD – Texas Children’s Hospital

 

 

 

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William T. Mahle, MD – Children’s Healthcare of Atlanta

 

 

 

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Matt Oster, MD, MPH – Children’s Health Care of Atlanta

 

 

 

Sara Pasquali, MD – C.S. Mott Children’s Hospital

Julie Slicker

 

Julie Slicker, MS, RD, CSP, CD, CNSD – Children’s Hospital of Wisconsin

 

 

 

James Tweddell, MD – Children’s Hospital of Wisconsin

 

January is Birth Defects Prevention Month

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Birth defects are common, costly and critical. Every 4½ minutes, a baby is born with a major birth defect.  Professionals, community groups and the public can act to reduce the risk of certain birth defects, detect those that occur as soon as possible and prevent secondary complications.

Heart defects are the most common birth defect and leading cause of birth defect related infant death.  While, most heart defects are not preventable, we encourage women to make a PACT for their own health and the family they may have one day.   All women, including teens, can lower their risk of having a baby born with a birth defect by following some basic health guidelines throughout their reproductive years.

Plan ahead

  • Get as healthy as you can before you get pregnant
  • Get 400 micrograms (mcg) of folic acid every day

Avoid harmful substances

  • Avoid drinking alcohol and smoking
  • Be careful with harmful exposures at work and home

Choose a healthy lifestyle

  • Eat a healthy diet that includes fruits, vegetables, whole grains, low fat dairy, lean proteins, and healthy fats and oils
  • Be physically active
  • Work to get medical conditions like diabetes under control

Talk to your doctor

  • Get a medical checkup
  • Discuss all medications, both prescription and over-the-counter
  • Talk about your family history

Women and their loved ones can participate in their PACT and take these important preventive steps that can lead to a reduction in the number of birth defects.