Heart to Heart: Maxwell's Journey

My sister Megan, her husband Matt and their three daughters recently welcomed a new addition to their young family - Maxwell James. Unfortunately, Maxwell was diagnosed and born with Hypoplastic Left Heart Syndrome (HLHS). HLHS is a rare congenital heart defect where the left ventricle of the heart does not develop normally.

Throughout the United States, roughly 1000 children are diagnosed with HLHS every year. Fortunately, over the last decade or two, early detection and treatment for HLHS have given those affected a chance for survival and hope of a relatively normal life.

Treatment for HLHS requires a series of three open heart surgeries, starting with the first within days of birth, a second around 6-8 months and a third procedure at 3-4 years old. These surgeries take steps to assist the heart with pumping oxygenated blood throughout the body. Eventually reconstructing the heart in a manner that allows the right side of the heart to make up for the underdeveloped left side.

Just five days after birth, Maxwell underwent his first successful surgery and remains in the PICU, making progress toward recovery. Megan and Matt remain optimistic about his continued recovery and are hopeful that he will be able to come home soon, but the reality is that every day is unknown and there is no way of knowing the level of care he will need when he is able to come home.

In addition to the physical stress and mental anxiety they face daily, the financial burden is impossible to ignore. Due to the extra attention and care Maxwell will require, especially in his first few months, Megan has decided to indefinitely put her career on hold, reducing their household to a single income.

My goal is to help support my sister and her family by relieving a small portion of the stress that has been unfairly bestowed upon them. Megan and her husband, Matt, have shown amazing resilience and a sense of grace through the first month of this journey that has truly blown me away. I hope that through continued support and the generosity of others, we can provide a small sense of relief and the strength they need to get through this difficult time as a family ... coming out the other side stronger than ever.

Thank you! #HLHS #MaxwellJames #sistersbyheart