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"CHD Stories"
If you live in New Jersey and have a baby, her heart will be checked because of one little girl born with a broken heart. Talia’s family, including mom Rachel Goldberg successfully advocated for the screening.
Talia was sent home with a critical congenital heart defect. I’ll let her mom share her story, but because [...]
I first struck up an online friendship with Amanda Rose Adams when she started working on getting every newborn in her state screened with pulse oximetry. I realized that she was absolutely the real deal when it comes to advocacy, speaking out, and effectively sharing her story. She started working on it and within [...]
Earlier this month, a video was uploaded to YouTube that featured a congenital heart disease family. I suspect this happens a few times a week. This video was much different. This video was uploaded by the president, well, his staff, but still given how much in the limelight this video has been on the president’s [...]
Congenital heart defects are different from many other illnesses. There aren’t just four or five varieties. There are at least 30. Too often with many of these defects, other underlying conditions are also present. For instance, about half of patients with down syndrome also have a heart defect.
Just a few months after I first [...]
Hardly a day goes by that I don’t read of another sweet baby lost to congenital heart defects. On most days, I read about a baby detected too late, or one that pulse ox might have helped. Corbin is one of those babies, and he’s so much more. His mother is an incredible advocate, and [...]
Sadly, as a heart mom active in the congenital heart defect community, hearing about another baby lost to this horrific condition is a several times a day occurrence. Every death touches me. No matter what I’m doing I always stop to learn more about the baby.
When I get emails about babies that were undetected [...]
Recent Posts
- Ask About Your Baby’s Heart at the Mid-Pregnancy Ultrasound
- Newborn Screening: Read About Screening Before Giving Birth + a Cute Cora picture
- Talia’s Story: The Family Behind the New Jersey Heart Screening Bill
- “Heart Warriors” Book Review and Giveaway: The Must Read for Any CHD Family
- CHD Awareness Hits the White House: The Lihn Family Tell Their Story
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