Our 20 week ultrasound was supposed to be one of the happiest days of our lives; we were to find out that we were having a baby girl. Unfortunately, after finding out the gender, the doctor also had some devastating news to tell us. We were informed that something was wrong with our sweet baby girl’s heart. She was soon diagnosed with a CHD known as Hypoplastic Right Heart Syndrome (HRHS)/ Pulmonary Atresia with Intact Ventricular Septum with suspected Coronary Dependent Sinusoids.
Despite this devastating news, we knew that she was given to us for a reason ,and that as her parents, we would do everything we could to help her. We decided to name her Madison, which is derived from the names Matthew and means “gift of God” and Matilda which means “strong fighter.” We knew this was the perfect name for our baby girl as she truly is the best gift we could ever receive. We also knew that with the long road ahead she would undoubtedly be our little fighter. Since her birth date on June 17, 2016 she has lived up to her name more than we could have ever imagined. With the help of an amazing team of surgeons, doctors, nurses, and specialists Madison has begun her heart journey. She underwent her first heart surgery on June 29, 2016 and has been recovering in the NICU since that time. While we were hoping to have her home in a couple of weeks, we recently learned that Madison’s condition has worsened and that she is in need of a heart transplant. As of July 15th 2016 she has been placed on the waiting list for a donor heart. Our love for our baby girl and the love and support of family, friends, and even complete strangers has been carrying us through this difficult time.
All generously donated funds will be used for Madison’s present and future medical expenses, commuting expenses and various living expenses related to Madison’s care. Any funds not used will be donated to various charity organizations dedicated to raising awareness for and researching CHD (congenital heart diseases) and also to the Morgan Stanley Children’s Hospital at New York Presbyterian.
We will also be using this page as a place to share updates on Madison’s transplant status and heart journey so please check back frequently. Our loved ones, friends, and members of the CHD community should also feel free to share words of support here.
Thank you from the bottom of our hearts for all of your prayers, love, and support.
Madison’s loving and proud parents,
Matthew & Stephanie