We are constantly adding to a library of resources for not only patients and their families, but clinicians as well, with the intention of improving the delivery of pediatric cardiac treatment.
By empowering families with information, they can get to the doctor who is most capable of treating their baby.
And by connecting clinicians with information and one another, we can help them improve their knowledge, skills and ultimately their treatment of congenital heart disease.
CHD Detection
- 20-Week Diagnostic Ultrasound Checklist
- Parade Magazine: Saving the Smallest Hearts: The Test Every Parent Needs to Know About
- Yahoo! Article: The $15 Test That Could Save Your Baby’s Life
- State Regulations and Hospital Guidelines for Newborn Screening for Critical Congenital Heart Defects
- CDC Report: Some Newborns Not Screened for Congenital Heart Disease (9/11/17)
- Pulse Oximetry Test
CHD Diagnosis
Understanding Your Child’s CHD Diagnosis
- Terminology- Cincinnati Children’s Glossary
- The Heart Within (a 30-minute documentary of heart families and their inspiring warriors)
Websites
- Center for Disease Control
- National Library of Medicine
- NHS
- Cincinnati Children’s Hospital’s Heartpedia
- University of Minnesota’s Visual Heart Lab
Books
- Illustrated Field Guide to Congenital Heart Disease and Repair (3rd Edition)
- Inside OR-1 with One of America’s Top Pediatric Heart Surgeons
- Walk on Water: The Miracle of Saving Children’s Lives
- Mended Little Heartguide
Inspiration
- Meghan Roswick – HLHS Badass
- The Heart Within (a 30-minute documentary of heart families and their inspiring warriors)
Treatment
Identifying the Right Care Providers
- Finding the Experts Database
- U.S. News & World Report: Best Hospitals for Pediatric Cardiology & Heart Surgery
- Society for Thoracic Surgeons: Congenital Heart Surgery Database
- Consumer Reports: Top Hospitals for Congenital Heart Disease
- CNN: 10 Ways to Get Your Child the Best Heart Surgeon
- BestDoctors.Com (paid referral service that may be offered as a benefit through your employer or insurance provider)
- OpHeart’s Second Opinion Service
Financial Resources
- Slate Article: It Cost $2.5 Million to Keep My Daughter Alive
- Article: How to Figure Out the Cost of Health Procedure Before It Happens
- Time Article: Bitter Pill. Why Medical Bills Are Killing Us.
- National Conference of State Legislatures’ Transparency & Disclosure of Health Costs and Provider Payments
- Clear Health Costs (limited data w/r/t CHD)
- Healthcare Bluebook (limited data w/r/t CHD)
- Fair Health (limited data w/r/t CHD)
- New Choice Health (limited data w/r/t CHD)
- OpHeart Help Fighting Denials of Coverage
Post-Treatment
Discharge Tools
- Wound Care (an instructional video)
- Nasogastric (NG) Tube Care (an instructional video)
Other National Organizations (United States)
- Adult Congenital Heart Association
- American Heart Association
- Children’s Heart Foundation
- National Pediatric Cardiology Quality Improvement Collective
- Pediatric Congenital Heart Association
CHD in the News
- Today: Mom Shares Toddler’s Heart Surgery Scar Photos: ‘I See Life, Light and Hope’ (9/29/17)
- Cardiology Advisor: CDC Some Newborns Not Screened for Congenital Heart Disease (9/11/17)
- New York Times: Jimmy Kimmel’s Emotional Monologue: His New Son’s Heart Condition (5/2/17)
- People: Jamie King Says Leo Thames Is ‘Doing Amazing’ After Revealing He Underwent Major Heart Surgery (9/23/16)
- Today: Fox News’ Bret Baier Talks About His Son’s Heart Disease (6/24/15)
- Shaun White Shares Childhood Battle with Heart Defects (2/9/14)
- Fox Sports: Panthers’ Olsen, Family Draw Inspiration from Young Son Battling Heart Condition (10/12/14)
- Humans of New York: The Story of Lotte
CHD & 3D-Printing
- ABC News: 3D-Printed Heart Gives Hope to Woman with Backwards Heart (2/20/15)
- CNBC: 3D-Printed Heart Helps Save Baby’s Life (10/8/14)
- CNN: How a 3D-Printer Changed a 4-Year-Old’s Heart and Life (10/6/15)
- Forbes: About a Boy: 3D-Printed Heart Model Saves Young Life (2/26/14)
- Fortune: Building a Better Printed Heart Faster (9/17/15)
- Houston Chronicle: Cardiologist Uses 3D Heart Models to Test, Perfect Difficult Operations (4/19/17)
- NBC News: 3D-Printed Hearts Help Surgeons Save Babies’ Lives (11/19/14)
- TMC Pulse: Shaping the Future of Patient Care (12/15)
- Washington Post: To help solve challenging cardiac problems, doctors at Children’s press ‘print’ (5/13/13)
3D-Printing in Medicine
Image Acquisition
- Materialise Imaging Protocol
- Radiological Society of North America (RSNA) 3D-Printing Special Interest Group
Regulation
- FDA: FDA’s Role in 3D-Printing
- Regulatory Affairs’ Professional Society: 3D-Printed Anatomical Models: FDA Explains Regulatory Framework
Segmentation
Printing
- ABC News: 3D-Printed Heart Gives Hope to Woman with Backwards Heart (2/20/15)
- CNBC: 3D-Printed Heart Helps Save Baby’s Life (10/8/14)
- CNN: How a 3D-Printer Changed a 4-Year-Old’s Heart and Life (10/6/15)
- Forbes: About a Boy: 3D-Printed Heart Model Saves Young Life (2/26/14)
- Fortune: Building a Better Printed Heart Faster (9/17/15)
- Houston Chronicle: Cardiologist Uses 3D Heart Models to Test, Perfect Difficult Operations (4/19/17)
- NBC News: 3D-Printed Hearts Help Surgeons Save Babies’ Lives (11/19/14)
- TMC Pulse: Shaping the Future of Patient Care (12/15)
- Washington Post: To help solve challenging cardiac problems, doctors at Children’s press ‘print’ (5/13/13)