Congenital Heart Defect Awareness Week

Congenital Heart Defect (CHD) Awareness Week is February 7th – 14th and we are so grateful to the families who have shared their heart babies with us. While necrotizing enterocolitis (NEC) most often affects preemies, babies born at term sometimes develop the disease. Term babies with other health conditions, like CHD, are at increased risk of NEC. Check out the stories and messages we highlighted during CHD Awareness Week 2021:

Baby Leyden, in our featured graphic above, was born at 39 weeks with a “relatively simple” form of congenital heart disease. Leyden’s parents were told she had a 97% chance of survival and not to worry. NEC was never mentioned as even a possible concern. Four months later, Leyden passed away from necrotizing enterocolitis. Leyden’s mother is committed to helping us build a world without this devastating disease.

Carol and her twin sister Lydia were born prematurely and both babies developed NEC. Carol has an atrial septal defect and pulmonary valve stenosis, congenital heart defects. Their family was not aware of the connection between CHD and NEC, and they are committed to helping other families learn how to advocate for their children. Thankfully, Carol and Lydia survived NEC and are now 9 years old.

Makenna was born at 35 weeks gestation with a heart defect and genetic condition. Makenna’s family was blindsided by her NEC diagnosis. Tragically, even though she received her mother’s milk, sweet Makenna passed away from NEC when she was 7.5 weeks old. Makenna’s family is committed to honoring their daughter by helping to raise awareness and working to build a world without this devastating disease. Providing heart babies with human milk can offer protection against necrotizing enterocolitis, although it sadly does not eliminate the risk.

Stella was born prematurely and diagnosed with heart defects as well as NEC. Stella’s family recognizes the need for more awareness of NEC and CHD, not to induce fear, but to allow for more diligent monitoring and quick intervention. Stella’s 5th birthday is around the corner and she has recently been cleared from all of her specialists!

Ty was diagnosed with Transposition of the Great Arteries (TGA) and had open-heart surgery when he was 8 days old. When Ty was 5 weeks old, he developed NEC. Ty is almost two years old and has a central line for TPN (IV nutrition), an ileostomy, and a G-tube for feeds. Ty’s family is committed to helping us raise awareness about the connection between CHD and NEC.

Arlo was born at 34 weeks gestation and diagnosed with a ventricular septal defect as well as heart failure. Arlo was thriving until he was four weeks old and developed necrotizing enterocolitis. Tragically, Arlo passed away from NEC in May of 2020.

Theo has a ventricular septal defect as well as coarctation of the aorta, and also developed NEC. Fortunately, Theo is doing well today. Theo’s family encourages other #CHD families to learn as much as they can about the risks of NEC.

Sophie Marie was born the day after Mother’s Day and overcame many obstacles, including heart surgery. After recovering from her heart operation, Sophie was diagnosed with NEC and died just a few days later, which happened to be the day after Father’s Day. 

You can join our movement to build a world without NEC by subscribing to our email list or donating in honor of a loved one.

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