(NewsUSA) – The birth of a child should be a joyous occasion, a time for families to celebrate the excitement and wonder that comes with parenthood.
But for families of children born with congenital heart defects (CHD), this exciting time can quickly become a scary journey of decisions, emotions and subsequent surgeries. It raises myriad questions, often with minimal guidance and few answers. And the emotional and financial stress can be staggering.
Jennifer Page, mother of 11-year-old Max, who starred in an iconic Super Bowl commercial as the Little Darth Vader, has first-hand experience with the highs and lows that came with his diagnosis. Max had his first surgery at 3 months old and has had 11 surgeries already in his short life. He is one of the 40,000 U.S. children born each year with CHDs.
“At first, the diagnosis of a congenital heart defect was so frightening and overwhelming,” said Jennifer. “But over time, I needed to learn all about Max’s condition and what his future would look like. I’ve come to understand how critical it is to have immediate, current and accurate information.”
To help families facing a CHD, the nonprofit group Mended Little Hearts worked with medical experts, parents and caregivers from across the country to develop the Mended Little HeartGuide. This comprehensive digital guidebook, developed with the generous support of global medical device manufacturer St. Jude Medical Inc., is aimed at parents and families of children with heart conditions.
The guidebook includes information about “what to do after a diagnosis,” “how to cope in the hospital,” “how to navigate insurance” and “how to manage information overload.” It also provides helpful advice and tips, such as:
* How to build a caring support network
* It’s natural to feel stressed
* Keep asking questions
* Don’t feel guilty when things don’t go perfectly
* Take care of you
* This is a lifelong journey
“We believe this guidebook — written by moms, dads, doctors and other advocates who know the struggles of caring for a child with a heart defect — can be a helpful resource,” said Dr. Mark Carlson, vice president of global clinical affairs and chief medical officer at St. Jude Medical. “Empowering families is part of our commitment to create innovative medical solutions that improve lives and keep kids thriving.”
For more information on CHDs and to download the Mended Little HeartGuide, visit MendedLittleHeartGuide.org.