Our Stories

Welcome to Our Stories! This section of our website is full of heart stories for It’s My Heart members who found out their new baby had a congenital heart defect while they were still pregnant. The expectant parent CHD experience is unique in that you are able to prepare for your the birth of your child, but you also have more time to worry about the future of your little one as well! Although you might be in that worry phase at the moment, it’s a good thing that your physicians diagnosed a CHD before birth! This allows your pregnancy to be followed by a cardiologist and allows your whole team of caregivers to be more prepared for your baby when it is born.

You may not be ready to read these stories right this second, but we encourage you to come back when you are ready! Our stories may educate you or comfort you, but they will definitely make you smile when you read about all our little troopers and just how amazing they are! Perhaps in the future, you would like to share your story here and know that another expectant parent can find strength in your experience.

*We received such a good response for Heart Story submissions, that they are continuing to be added every day. Please do not get discouraged if your story has not yet been posted. Check back soon for more stories!

Heart Stories

Atrial Septal Defect (ASD), Congenital Heart Block
Jackson

Atrial Septal Defect (ASD), Heterotaxy Syndrome
Savannah

Atrioventricular Septal Defect (AVSD)
Faith

Complex Single Ventricle; L-Transposition of Great Arteries, ASD, VSD, Tricuspid and Pulmonary Atresia
Bryce

Congenital Heart Disease
Zach (a grandparent’s story)

Double Outlet Right Ventricle (DORV), Transposition of the Great Arteries (TGA), Ventricular Septal Defect (VSD), Atrial Septal Defect (ASD), Pulmonary Stenosis, Underdeveloped Left Ventricle
Graceful

Hypoplastic Left Heart Syndrome (HLHS)
Henry
Isaiah (en español)
Jacob Dylan
Kaitlin (single parent)
Katelyn
Madison
Molly’s Baby Girl (still expecting!)
Parrish
Vivian
Zachary

Hypoplastic Right Heart Syndrome (HRHS), Double Outlet Right Ventricle (DORV), Pulmonary Atresia (PA), Ventricular Septal Defect (VSD)
Jasper

Hypoplastic Right Ventricle (HRV), Tricuspid Artresia (TA), Transposition of Great Arteries (TGA)
Sierra

Critical Pulmonary Stenosis, Tricuspid Valve Regurgitation, Enlarged Right Atrium
Andre

Single Ventricle, Patent Ductus Arteriosus (PDA), Heterotaxy
Madileine

Tetralogy of Fallot
Emma
Ethan (twins!)
Joshua

Transposition of the Great Arteries (TGA)
Brennan
Dezi

Truncus Arteriousus/DiGeorge Syndrome
Emma

VACTERL assoc. : A-Imperforated anus, C-DORV with pulmonary atresia, right ventricle to pulmonary conduit, VSD, mitral valve stenosis and regurgitation, pulmonary hypertension, pacemaker, T- tracea-esophageal fistula, E-long gap esophageal atresia
Savannah Maria

Ventricular Septal Defect (VSD), Atrial Septal Defect (ASD)
Henry