Nevaeh’s Story

Nevaeh led an extraordinary life for 14 months. Four months before her birth, her parents received wonderful and crippling news all in the same day – their fourth child would be a girl but her heart would not be properly developed. Before she took her first breath, Matt and Jamie named her Nevaeh – heaven spelled in reverse.

Filled with emotion, the Wallaces immediately learned all they could about hypoplastic left heart syndrome, a condition in which the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body) is severely underdeveloped. The result is that the heart is completely unable to support the circulation needed by the body's organs. The course of treatment recommended for Neveah involved 3 open heart surgeries. Without treatment, Hypoplastic Left Heart Syndrome is uniformly fatal, often within the first hours or days of life.

Nevaeh Rae Wallace was born on Valentine's Day 2008 at Froedtert Memorial Lutheran Hospital and was almost immediately transported to the Children's Hospital of Wisconsin Neonatal Intensive Care Unit where she spent her first days of life. She underwent her first open heart surgery during her 8th day of life and remained at the hospital for 19 additional days before going home to live with her parents and her 3 other siblings. At 4 months old Nevaeh underwent her second open heart surgery. She did amazingly well and was out of the hospital after 10 days.

“Over the next 9 months Nevaeh lead a pretty typical ‘baby’ life,” said Matt. “Other than the scar on her chest you would never have known anything was wrong with her.”

The family had settled into their own kind of “normal” and almost felt able to relax as they waited for Nevaeh to grow and become strong enough for her third surgery. However, in the spring Nevaeh's color began to change and worry began to rise. On April 21, 2009 Nevaeh was taken to the emergency room at Children’s Hospital of Wisconsin where she was diagnosed with an enlarged heart, and the family learned the devastating news that she was in heart failure. She spent the next 5 days in the hospital being given medications to help improve her heart function. She showed improvements and the doctors decided she would be happiest at home while she continued on her medication.

“We brought our princess home for the last time on Saturday, April 25,” said Matt. “On April 26, 2009 Nevaeh went into cardiac arrest and died. We were left with empty hands and broken hearts.”

“The last 5 months have been filled with many hard and difficult days as we process the loss of our beautiful daughter. I don’t think I will ever stop counting how long it has been. I came home this week and remembered how much I used to love to walk in the door and see her big bright smile. You could have had the worst day ever and seeing that would make it better,” said Matt. “As we've been processing our loss we began to dream of ways we could still let Nevaeh's beautiful life impact others.”

In honor of Nevaeh, Matt and Jamie Wallace want to create a place where siblings of children who are hospitalized can play. It can help tremendously to alleviate the stress on parents to know their other kids are receiving quality care and attention while they are supporting their sick child. And it provides an enjoyable break for the siblings of a sick child, also reducing the stress they feel.