Congenital Heart Disease is so unpredictable, no case is the same. Some kids struggle while others with the same diagnosis seem to thrive. Sometimes a child can be doing so well and just minutes later be only holding on by a thread. Right now there is no cure for CHD, only surgeries and procedures to palliate or make symptoms less severe. Today’s honored heart warrior is Lydia. Lydia’s parents, Chase and Lindsey, found out about her heart condition at her 20 week anatomy ultrasound. Here is Lydia’s story:

Lydia Faith Norris was born on February 23, 2015 with the diagnosis of heterotaxy, Atrial Septal Defect (hole between the upper chambers), Ventricular Septal Defect (hole between the lower chambers), Pulmonary Atresia, and Complex Single Ventricle. Her doctors recommended a 3 step surgical procedure for Lydia’s single ventricle anatomy. This would include the BT shunt shortly after birth, the Glenn at 6-8 months, and the Fontan around age 3. At 8 days old Lydia had her open-heart surgery for the BT shunt. She spent 6 and a half weeks recovering at Vanderbilt Children’s before finally getting to go home for the first time. She played, she loved, she cuddled, and she lived the “normal” life. However, on June 17th, 2015 Lydia tragically and unexpectedly lost her battle to CHD.

In the world of CHD you can do everything right and still end up with tragedy. Most heart defects have no genetic link or known environmental cause.  More children die from CHD each year than all forms of childhood cancer combined. Relative to the prevalence of CHD, research is grossly underfunded. With more research we can change the lives of children with heart defects like Lydia’s.

If you would like to join us in our cause, you can make a donation to CHD research. Donate during CHD Awareness Week (Feb 7th-14th) and we’ll send you a Project Heart t-shirt!

Lydia’s parents have started a nonprofit organization in her memory. They are currently collecting new children’s books to donate to Vanderbilt Children’s Hospital in honor of Lydia’s birthday. If you would like to make a donation or learn more about Lydia you can visit their Facebook page: https://www.facebook.com/1234lydiaslove/?fref=ts

PROJECT HEART IS A 501(C)(3) NONPROFIT DEDICATED TO RAISING FUNDS FOR CHD RESEARCH. HELP US CHANGE THE LIVES OF CHILDREN LIVING WITH CHD. DONATE A TAX DEDUCTIBLE GIFT TO PROJECT HEART AND SUPPORT CHD RESEARCH HERE: HTTP://THINKPROJECTHEART.ORG/DONATE