The Centers for Disease Control and Prevention says about 1% of babies born in the United States, or 40,000 each year, are born with a congenital heart defect. It's something no parent wants to face, and for some kids, it can be deadly. A local mother, during American Heart Month, is now turning her loss into a way of helping other families facing similar struggles.
Simply playing with her kids means precious time and precious memories that Alexandria Nelson cherishes every day.
"We go through and we can actually look at different pieces on this quilt and actually remember certain memories of those days in the hospital," said Nelson.
The quilt isn’t just any quilt. It’s made from clothes and blankets that belonged to her son Theodore.
Alexandria and her husband Michael’s second child was born on August 30, 2019, at a Pittsburgh hospital with a very rare and serious congenital heart defect.
"Hypoplastic left heart syndrome is when the left side of your heart does not form correctly and sometimes just not at all," Nelson said.
Theodore had several open-heart surgeries to give him a chance at life.
"Theodore’s road was rough," said Nelson. "He was a warrior from the very second he was born."
While it was difficult for Theodore and his family, there were happy moments filled with joy.
"I will never forget ... February 3 was one of the best days of our entire lives where he cracked a smile," Nelson said. "It literally brightened the whole day."
Sadly, Theodore never left the hospital. At 7 1/2 months old, he passed away in April 2020.
Through the anguish of losing their baby boy, Alexandria turned her attention to carrying on Theodore’s memory by helping others families facing similar struggles. Her blog called “Falling Right Side Up” documents their journey.
"And the importance of when life gets turned upside down, to find a way to fall up, and just to remain positive as best as you can," she said.
A month after Theodore’s death, Alexandria began sending out Teddy Bear Care packages. She sent one each month to the family of a pediatric heart patient somewhere in the country. It includes a T-shirt, an inspirational book, $100 and Theodore’s story. She hopes to create a non-profit organization to help even more.
"A lot of the families that I’ve actually given to stay in touch and give me updates on their son and they become friends," Nelson said. "So it’s really a gift that keeps on giving because it shows our support for them but then they still support me somehow by just feeding my soul with good news about their heart warriors."
Meanwhile, she's raising awareness and pressing for more research on congenital heart defects.
"CHD affects one in every 100 children born; whether it’s a really severe case like my Theodore’s or not so severe, it changes your complete way of life," said Nelson.
For more information about Theodore's story, or to donate to Alexandria's cause and help the families of kids with congenital heart defects, click here.