I think we all have much to learn from each other, rather your child was just diagnosed or you’ve been living with CHD for years.
Anyone that has a CHD affiliation is welcome to be added to the directory. I’m categorizing them as I think would be helpful and am open to suggestions. When known, the defect of the blogger is listed. I’m also going to attempt to group the bloggers by defect under each category.
Some of these are updated almost daily and others haven’t for years. I don’t feel that matters for this directory. It’s the stories that are shared that count.
If the blogger is a parent blogging about a deceased child, it’s indicated in parenthesis after the blog with a (<3) symbol.
Click here to add your blog to the congenital heart defect blog directory. All are welcome, even if not updated recently.
Parent Blogs
Cora’s Story(<3)
Jonas’s Story (HLHS)
The Amazing Atticus (HLHS)
The Pearl in the Oyster(William’s Syndrome + Other CHDs) (<3)
When Life Hands You a Broken Heart ( D-TGA, DORV, VSD, PS & RAA)
Heart Mommy (ToF)
Nothing for Granted Truncus arteriosus
Sawyer’s Heart(<3)
Trevor’s Heart Journey (DILV / HRH)
Olivia’s Heart(HLHS)
The Girl with the Golden Heart(HLHS)
Ava Alexandra Naverrette)Heterotaxy Syndrome (<3)
Signs of Life (Pulmonary Atresia with VSD)
Jacob’s Journey (HLHS)
Adventures of Torquil and Cheese Doodle (CoA and mitral valve defects)
The Lihn Family (HLHS)
Mason’s Journey: Our Boy with a Special Heart (ToF)
Broc’s Journey (Shone’s Complex)
Thank you, Thank you, Thank you Sam I Am (“right upstairs/left downstairs heart”)
Half Heart, Whole Life (HRHS)
CHD Babies (CHD Research and Resources)
The New Left Heart Kid (HLHS)
Baby Pierce (<3)
Gabriella’s Heart (transplant)
Bandaged Heart Journeys (HLHS)
Our God Shaped Life (Truncus arteriosus)
Our Little Sweetheart: Josephine Grace (Interrupted Aortic Arch (type B), 22q Deletion Syndrome)
LT4SwanCHD (<3)
Atreyu’s Heart (HLHS)
Bent, Not Broken (Tricuspid Atresia)
Doughtery Update (Tricuspid Atersia, Hypoplastic Right Heart Syndrome)
Our Journey with CHD (Subaortic Stenosis, Pacemaker Dependent)
All You Need is Love (HLHS)
Fierce and Feisty (HLHS) <3
The Stanley Clan (critical aortic stenosis and coarctation of the aorta)
Keeping Up with Carter’s (Single Ventricle, Dextrocardia, Transposition of the Great Arteries)
Learning from Faith (HLHS, Heterotaxy)
Funambulism for Beginners ( ToF with pulmonary atresia and pulmonary vascular disease and 22q11.2 DS)
A Trip to Holland (Two CHDers)
4brokenhearts (mom of three and grandma to one all having heterotaxy syndrome (3 with TAPVR, 1 with PAPVR) and other cardiac defects associated with heterotaxy syndrome.)
Green Eggs and Hamilton (HLHS)
Our Journey After Angeline (<3)
The Girls Have Heart (Truncus Arterious, Type 2)
Our Journey (Multiple VSD)
The Stuttler Family (HLHS)
The Jackley Journeys (HLHS)
Patient
Paul Cardell: Before My Heart Stops
Adventures of a Funky Heart (<3)
It’s All About the Hearts (HRHS)
Been There Done That with Kat (AVSD)
Blogs by CHD parents/patients not focused on CHD
The Legend of Thousand Acres Farm
Other CHD Blogs
Three Kids, Four Years (CHD Wife, Husband has TOF)
Everyday Morning (CHD Wife, Husband has TGA, waiting on transplant)
Organizational blogs (Hospitals, Parent organizations and etc)
Learn About CHD (It’s My Heart)
James’s Project Blog (Patient Safety)
Preemptive Love Blog
Adult Congenital Heart Association Blog
Mended Little Hearts Blog
Children’s Hospital of Boston Blog (not just CHD focused)
Texas Children’s Hospital Heart Related Blog Posts
Children’s Hospital of Philadelphia Cardiac-Related News Updates
Holy Cross Hospital Heart Blog- CHD Posts
Caringbridge Sites
Isabella Sanchez (Holmes Heart)
Colton Berlin (HLHS)
Feel free to use the image below on your blog and link back to this page:
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Hi Kristine, could you update my blog name on the list? It is now called A Fulfilled Mommy. Thanks!