Want to help us Conquer CHD? Become an individual fundraiser to support critical programs at PCHA. It takes less than 5 minutes and is as easy as 1, 2, 3!
1. Fill out the online sign up form (45 seconds)
- Enter your first and last name.
- Enter your mobile phone number.
- Enter your email.
- Click “Become a Fundraiser”.
2. Click the link to complete registration (45 seconds)
You’ll receive a text message and that will guide you to a page where you can complete your registration. This link and the email will be titled “Thanks for becoming a fundraiser!”
Click the link and enter your password.
3. Customize your page (< 3.5 minutes)
The last step is to personalize your page.
- Upload a picture (a selfie will work!)
- Set fundraising goal
- Personal message telling people the impact they can have if they give right now.
Don’t forget to share your fundraising page to social media to get your friends and family involved.
CLICK HERE to sign up and get started!
Emersynn was born this past November and is our miracle baby! She is doing absolutely amazing!
At our 20 week anatomy scan, we found out that our little girl has a congenital heart defect (CHD). Shortly after this news, we were referred to a high risk OB and a pediatric cardiologist. When we saw the ped cardiologist, he broke the news that she does indeed have a complex heart defect which is VERY rare. Our baby has congenitally corrected transposition of the great arteries (ccTGA), ventricular septal defect (VSD), pulmonary stenosis (PS) and dextrocardia. 1% of pregnancies end up with a baby with a CHD. Out of those one percent, .5 – 1% end up with ccTGA. That is how rare the defect is! Only 5,000-10,000 people in the US have this condition!
A little bit about her condition: In ccTGA both ventricles (pumping chambers) of the heart are reversed. Fortunately, the arteries are reversed too, so the heart actually “corrects” the abnormal development, thus the name “congenitally corrected transposition of the great arteries.” However, ccTGA is a complex malformation in which the heart is far from being normal.
In a normal heart, the left-side pumping chamber (left ventricle) sends blood to the entire body. The right-side ventricle pumps blood only a short distance, to the lungs. The left ventricle is built to last longer than the right ventricle: 80 to 100 years if no other health problems exist.
In ccTGA, the heart twists abnormally during fetal development, and the ventricles are reversed: The stronger left ventricle pumps blood to the lungs and the weaker right ventricle has the harder chore of pumping blood to the entire body. The right ventricle is not built to last as long as the left ventricle. Emersynn is currently almost 5 months old and has not had any surgery thus far! She is defying all odds and doing SO amazing! She is growing well and hitting all of her milestones on or before (!) she is supposed to! This little girl amazes me more and more everyday! She is such an inspiration to everyone around her and is such a strong little warrior!
Jennifer Weiner was diagnosed with Truncus Arteriosus and a VSD after birth in 1982. She has had two open heart repair surgeries, at 18 months old and 17 years. After complications arose and various anomalies were uncovered in early adulthood, Jennifer had a stent placed in her LPA and received an ICD. Now 35, she is a graduate of DePaul University, with a degree in Elementary Education and an MA in English and Creative Writing, from SNHU. Jennifer currently volunteers for the Pediatric Congenital Heart Association, both nationally and locally, managing the PCHA Blog and IL Chapter Communications. She also serves on the steering committee of Chicagoland Cardiac Connections, an organization that provides support and resources for patients with cardiac devices, based out of Lurie Children’s Chicago, and writes for Heart to Heart with Anna, a CHD themed podcast. Jennifer will continue to be followed by an Adult CHD team throughout her life.