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Most people are celebrating today, Valentine's Day, with shiny red hearts, chocolate, flowers, and fancy dinners. How exciting it is to celebrate love!
But for some of us, this day has a double meaning. Out thoughts slide from the shiny red hearts to anatomical heart diagrams, from celebrating love to celebrating...life.
Today is Congenital Heart Disease Awareness Day! Approximately 1 in 100 babies are born with some type of congenital heart defect. Some of these defects are managed with medication, others heal in time, but many require, multiple procedures, surgeries, and lifelong monitoring.
Even though CHD is very prevalent, most parents will tell you they were completely blindsided by their baby's diagnosis and that they have never felt so alone. This is why I have decided to dedicate this post to resources for CHD parents, rather than listing statistics for awareness. Not that statistics are unimportant, but the need for support is great. I have been blessed with a large network of CHD professionals and parents. This support makes a huge difference in my ability to educate myself, as well as my mental stability while facing the hand we've been dealt. With that said, here is my list of go-to resources for new CHD parents (and friends and relatives):
- Books- This list includes a variety of books written by medical insiders and parents with CHD experience. Read the descriptions to learn about each title.
The Parent's Guide to Children's Congenital Heart Defects: What They Are, How to Treat Them, How to Cope With Them (Paperback)
by Gerri Freid Kramer
- Walk on Water: The Miracle of Saving Children's Lives (Paperback) by Michael Ruhlman
- In a Heartbeat: A Baby's Heart, A Surgeon's Hands, A Life of Miracles (Paperback) by Kimberly Russell
- The Heart Of A Child: What Families Need To Know About Heart Disorders In Children (Hardcover) by Catherine A. Neill
Heart Warriors: A Family Faces Congenital Heart Disease
by Amanda Rose Adams
- Websites and Blogs- This list of websites and blogs includes professional resources as well as personal CHD family experiences. You can learn valuable information from both venues. This list is just a sample of this type of resource. Each link listed below will have additional resources for you to explore.
- Congenital Heart Information Network
- Cove Point Foundation
- The Children's Heart Foundation
- Baby Hearts Press (Great books!)
- Cora's Story
- Heart Waves
- Our Journey with CHD
- Johnson Heartbeat
- The Nut House
- Online Groups- What would we do without our online groups?? Real-life, local support groups are great, but not always accessible. This list offers support resources 24 hours a day/7 days a week. All you need is Internet access.
- Facebook, believe it or not, offers many CHD support groups. Some are general groups, like Heart Mamas and Heart Parents. Others are CHD-specific. Search Facebook for your child's heart defect by name to find the right group for you.
- The Baby Center community includes a group for CHD parents called Babies and Children with Heart Problems.
If you are a new CHD parent searching for answers,or you know a new CHD parent (and chances are pretty high that you do), I encourage you to spread the word about Congenital Heart Disease, the number 1 cause of death due to birth defects in babies. My personal advice? Ask questions (no question is dumb!), educate yourself, and be an involved player in your child's medical care team.
Happy Heart Day, my friends!