I am the proud mama of three of the most incredible kiddos I’ve ever met. Lilly is six and Rowan is two.

Our sweet Sylvia would have been four years old. She was born with Congenital Heart Disease which included a slew of heart defects, a combination never before seen by medical professionals: Double Outlet Right Ventricle, Transposition of Great Arteries, Atrial Situs Inversus, Dextrocardia, Pulmonary Stenosis, Heterotaxy, Ventricular Septal Defect, and the underdevelopment of several areas of the heart.We found out about most of her defects during our prenatal care. First and foremost, as believers that all life is precious, we knew Sylvia deserved to live and to fight. Secondly, after many meetings with many doctors, we were told that despite the severity of her situation, there was a very promising coarse of surgical action that could lead to a fairly normal life with the longevity we were praying for.

Two weeks after she was born, she endured her first open heart surgery, a shunt to provide temporary blood flow to buy her time until her major surgical repair.

Despite doctors’ best efforts, at seven months old, her big surgery did not go well. While weaning her off bypass, her left ventricle was not working well.After three months of life support, making hospital history with trials and never-before-done therapies, all while waiting to see if her native heart function would return and simultaneously praying for a heart transplant, her little body succumbed to the stress and she went Home to Jesus on October 11th, 2016.

Our lives are forever changed because of Sylvia. Every moment I breathe, I carry the pain of missing her, and it hurts horribly.

My mission as her mom is to use my love for writing to preserve her legacy, advocate for the Congenital Heart Disease community, and bring glory to the Lord, to show that His grace and mercy reign despite the tragedies of this world. My dear husband and I are forever proud of our sweet girl.

Thank you for being here. Welcome to her story.


Email: cschuetz10@gmail.com

Instagram: @mamaneedssomecoffee

*This site does not necessarily reflect the views of Faith Lutheran Church.