For many parents, the worst pain imaginable is the thought of losing a child. It’s an emotion that many cannot understand unless the circumstances happen to them.
A family from Stoughton, WI, found themselves forced to cope with this kind of loss after losing their baby girl to congenital heart defect complications. [[1]]
Her name was Nevaeh Rae Wallace, and her family says that she was a ray of light.
Her mom recalls the smile on her daughter’s face with fondness. “She had this presence about her that I can’t really explain. She just knew the world in a different way.”
Grief Is a Natural Response to Loss
Nevaeh was born on Valentine’s Day in 2008 with hypoplastic left heart syndrome. It is a severe congenital defect that leaves the left side of the heart significantly underdeveloped.
A normal heart uses the left side to pump oxygenated blood to the aorta, which is the large artery that carries the blood to the rest of the body. For Nevaeh and other children with this condition, the mitral valve that separates the two chambers on the left side is too small or completely closed, and the left ventricle is undersized. The aortic valve is too small or also closed. [[2]]
Children with hypoplastic left heart syndrome often face several complex heart conditions with unique variations. [[3]]
Nevaeh went through open-heart surgery at eight days old. It would be 26 days before they could bring her home for the first time. Her care required numerous appointments, extra monitoring, and procedures, but they got to spend three months together as a family.
She had another open-heart surgery when she reached four months of age. She would stay in the hospital for another nine days to make it through the recovery process.
The family was encouraged by Nevaeh’s progress. She grew alongside her siblings, celebrated Christmas, and started walking at 11 months.
Two months later, everything changed.
It Only Took One Moment for Everything to Change Forever
“She couldn’t recover because of the way her heart was structured,” her mom said. “It was still a shock because she was doing so well… and then all of a sudden, she was gone.”
Nevaeh’s father said that those days after losing his daughter were like living life stuck in park. He described it as watching everyone else continue with what they were doing while you’re there, unable to move in grief.
One of the ways that the family worked to cope with losing Nevaeh was to serve others. Their first project was to raise over $300,000 to build a playroom at Children’s Wisconsin in Milwaukee, which was where their daughter and sister received treatment. The room, called the Play Room of Hope, now provides meaningful support to those with a sibling cared for at the hospital. [[4]]
Nevaeh’s mom said that they saw the outcome as a blessing. “We were able to channel our hurt and grief to do something positive.”
Nevaeh’s sister Brielle is now 18 years old. She says that a trip to the beach in Florida helped the family heal because it helped them start thinking about ways to help others. In 2020, that led to the creation of the nonprofit Nevaeh’s Rae of Hope.
The organization provides families who have recently lost a child an all-expenses-paid getaway to help them find the restoration that Nevaeh’s family needed.
Although the organization is still in its early stages, they’ve managed to send one family to Florida and will send two more soon. In doing so, the family hopes that Nevaeh’s legacy continues living.
“She was here, and she existed, and we want her to always be remembered,” her mom said.
Nevaeh’s name, when spelled backward, is “heaven.”
How to Support Someone Who Is Grieving
It isn’t easy to know what to say to someone when they experience grief and loss. Every situation is different, but here are some ideas to try. [[5]]
- Don’t ask how people are doing because the answer is usually obvious. Try to check in with their feelings instead.
- Name the person. It might trigger tears, but we also need to keep the people we’ve lost close to our hearts. Talk about how much you miss the person instead of offering sympathies.
- Provide hope. People work through grief in their own time and way. When you can be there for them, it’ll be an easier transition.
- Be proactive about providing help. Ask others what the person or family needs instead of having a direct conversation, especially in the first days after a loss.
For more information on how to help this organization, you can visit Nevaeh’s Rae of Hope online at https://www.nevaehsraeofhope.org.
References:
[[1]] https://www.wkow.com/news/family-turns-heartbreak-into-hope-helping-others-cope-with-child-loss/article_42259c38-ab16-11ec-ace9-27126e3b7f0b.html ; [[2]] https://www.chop.edu/conditions-diseases/hypoplastic-left-heart-syndrome-hlhs; [[3]]https://www.cdc.gov/ncbddd/heartdefects/hlhs.html ; [[4]] https://www.caringbridge.org/visit/nevaehw/journal#_=_ ; [[5]]https://www.health.harvard.edu/mind-and-mood/ways-to-support-someone-who-is-grieving
