Conquering Congenital Heart Disease Inc

Peyton Rae Brean

12/12/22-12/24/22

In honor of our daughter Peyton Brean, please consider donating to Conquering CHD Inc. Conquering CHD (formerly Pediatric Congenital Heart Association) exists to conquer the most common birth defect. They accomplish this through awareness, knowledge, community and research.

At 20 weeks gestation, Peyton was diagnosed with a severe congenital heart defect (CHD) called Tetralogy of Fallot (TOF). Tetralogy of Fallot consists of four cardiac defects: a Ventricular Septal Defect (VSD), Pulmonary Atresia (PA), overriding aorta, and right ventricular hypertrophy. At 26 weeks gestation, she received an additional diagnosis of major aortopulmonary collateral arteries (MAPCAs). MAPCAs are arteries that branch directly off the aorta to supply blood to the lungs. These arteries formed due to her pulmonary arteries not developing in utero. Tetralogy of Fallot with pulmonary atresia and major aortopulmonary collateral arteries (TOF/PA/MAPCAs) is the most complex and rare form of Tetralogy of Fallot. Due to the rarity of this diagnosis, Peyton required the care of highly specialized surgeons and doctors at Lucile Packard Children’s Hospital at Stanford. Doctors at Stanford also found that Peyton had an Atrial Septal Defect (ASD) and a Persistent Left Superior Vena Cava.

Our daughter's CHD diagnosis shook us to our core. There was no explanation as to why this occurred. There is a fix but no cure. We knew it would be a lifelong battle for Peyton. She would be facing multiple open heart surgeries within the first year of life with more needed throughout her lifetime. Our lives were forever changed. We were prepared to take care of her and support her throughout her heart journey. We researched endlessly and lived at doctor appointments throughout pregnancy. We knew this complex and rare diagnosis came with serious risks and potential complications.

Peyton was born on December 12, 2022 at 5:15pm. She made her entrance via a crash C-section due to her heart rate suddenly dropping during labor. We spent the next 10 days visiting Peyton in the NICU. She endured multiple ultrasounds, EKGs, EEGs, CT-scans, MRIs, bilirubin lights, IVs, various feeding tubes, and positive pressure oxygen (CPAP). Peyton was doing well. Doctors at Stanford were telling our doctors at CHOC they would be meeting her soon. We thought the 3 of us would be headed home.

On December 23rd around 7am, we woke up to a phone call from Stanford. It was the NICU doctor and the worst phone call a parent could receive. Peyton was in cardiac arrest. We rushed to the hospital and arrived to see the team doing compressions on Peyton. Peyton was transferred to the Cardiovascular Intensive Care Unit (CVICU) and placed on ECMO. Peyton passed in her mother’s arms on Christmas Eve around 5pm.

CHD kids are known as heart warriors because of the constant lifelong battle they endure from the moment they are born. We are at a loss and feel so empty without our precious daughter. She taught us so much through her strength in her 12 short days. We would like to help prevent other families from experiencing this pain by supporting Conquering CHD. We are forever part of the CHD community and will continue to share Peyton’s story. Thank you for all of your love and support for our daughter’s journey.

Lisa & Corey Brean