On February 14th, 2008 our daughter Nevaeh Rae Wallace was born the 4th of our 5 children at Froedtert Hospital in Milwaukee, Wisconsin. Just four months prior, our lives had changed forever as we went in for a routine level 2 ultrasound and fetal echocardiogram. We received every parent's worst nightmare when the cardiologist said something was not quite right. Our precious little girl was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). Hypoplastic Left Heart Syndrome is a congenital heart defect which affects normal blood flow through the heart. With HLHS, all of the structures on the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body) are severely underdeveloped. This results in a situation where the left side of the heart is completely unable to support the circulation needed by the body's organs. Without treatment, Hypoplastic Left Heart Syndrome
is uniformly fatal, often within the first few hours or days of life.
After confirming her condition through an echo shortly after birth, Nevaeh was
transferred directly to the NICU at Children's Hospital Of Wisconsin where she stayed her first few days of life before her first surgery. On February 22nd, at just 8 days old, Nevaeh's first open-heart surgery was completed. We spent the following 18 days in the hospital as Neaveh continued to recover from surgery. Our other 3 kids, ranging from 8 to 2 years old, made frequent visits while staying with their grandparents. But their young ages often made the stays difficult as there were very few opportunities for siblings at the hospital. Between the cramped rooms, mask wearing, and frequent visits from the medical staff, we quickly learned that entertaining 3 little kids at a hospital while still trying to take in as much time with them as possible was difficult. But on March 11th, we were finally able to take Nevaeh home after 26 days in the hospital.
Although we were so extremely happy and blessed to be able to take our
baby girl home, it came with a whole set of challenges as we navigated life
with an HLHS baby. With extra monitoring, appointments, and procedures we
were able to spend over 3 months at home as a family. On June 16th, just
four months after her birth, we took Nevaeh back into the hospital for her
second open heart surgery where we stayed another 9 days through her
We spent the following months continuing to monitor and care for Nevaeh at home. She continued to develop like every other baby. She was starting to take her first steps and say her first words as we celebrated her first birthday on Valentine's Day of 2009.
After her first birthday, Nevaeh struggled with some colds and ear infections. We noticed some changes in her that concerned us. After numerous doctor consults and appointments, in late April, our worst fear became a reality. We were sent to the hospital and were told she was in heart failure. Hoping to prolong the need for a heart transplant they placed her on new medications that appeared to be stabilizing her condition, and sent us home from the hospital on April 25th, 2009.
Tragically, on April 26th, 2009, Nevaeh's fight came to an end as she unexpectedly passed away at home. (for more details on Nevaeh's story visit our Caring Bridge page) As we began to heal as a family, our desire to keep Nevaeh's memory alive through helping others began to grow. Because of the struggles that came with having 3 little kids along with a child in the hospital, we decided to start raising
money to build the Playroom of Hope, a sibling care room that focuses on
supporting the siblings of children in the hospital. In just under 2 years,
we raised over $300,000 and the Playroom of Hope was opened for
siblings in September of 2015.
Shortly after Nevaeh died, we were lucky enough to take a trip to Florida that made a huge impact on our family during this difficult time of our lives. Knowing how influential that trip was as the beginning of our healing as a family, we wanted to start a charity that would give other families this same opportunity. In remembrance of Nevaeh, we hold an annual fundraiser over her birthday each year to raise funds to send other families on these special getaways. Although Nevaeh's Rae of Hope is in its beginning stages, we are so excited to see how your support can help families going through these difficult situations. Donations are always welcome, along with any connections or support with trip accommodations.