ultrasound

Ask About Your Baby’s Heart at the Mid-Pregnancy Ultrasound

On May 9, 2012 · Leave a Comment · In Advocacy, Ultrasound

These days, many couples are anxious to know the sex of their baby. Often they find out at a mid-pregnancy ultrasound, usually done sometime between the 18th and 22nd week of pregnancy.

That ultrasound is often the time when about half of heart parents find out their child will be born [...]

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Newborn Screening: Read About Screening Before Giving Birth + a Cute Cora picture

On April 10, 2012 · 1 Comment · In Resources, Uncategorized

Before Cora was born, I focused a lot on keeping her safe during pregnancy. I got so caught up in the tests and screenings during pregnancy, I gave newborn screening little thought. I knew that a heel stick would be done and a bit of her blood taken, but thought it only [...]

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Talia’s Story: The Family Behind the New Jersey Heart Screening Bill

On March 30, 2012 · Leave a Comment · In CHD Stories, Pulse Ox

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 [...]

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“Heart Warriors” Book Review and Giveaway: The Must Read for Any CHD Family

On March 29, 2012 · 12 Comments · In Advocacy, CHD Stories

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 [...]

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CHD Awareness Hits the White House: The Lihn Family Tell Their Story

On March 25, 2012 · 5 Comments · In Advocacy, CHD Stories

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 [...]

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Heart Strings

Heart Strings

On March 21, 2012 · Leave a Comment · In CHD community

A common thread weaves our lives together.

Our hearts are all strung together,

Patients, parents, and anyone that loves someone with a broken heart.

We have different political beliefs, values, backgrounds.

You can find us all over the globe, in all walks of life.

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Who Qualifies As a Heart Mom?

On March 4, 2012 · 1 Comment · In CHD community

This might be the shortest post I’ve ever written, because it’s simple.

A heart mom is any mother with a child with a heart defect, no matter if it’s a lesion that never requires surgery and doesn’t affect day-to-day life, a mom that has spent half her child’s life in the hospital or a mom [...]

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Screening for Heart Defects: Moms Move Pulse Ox to National Forefront

On February 22, 2012 · 2 Comments · In Pulse Ox

These days, hardly a day goes by without a news story on screening newborns for heart defects. It’s a “hot topic.” Screening for heart defects is moving congenital heart disease into becoming a household phrase–one that all parents are at least aware of. That’s a good thing.

As pulse oximetry screening becomes more popular [...]

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Top Ten Ways You Know You’re a CHD Parent Advocate

On February 14, 2012 · Leave a Comment · In Uncategorized

1. CHD Awareness week makes your hardest finals week in college look like a week on the playground.

2. You find yourself saying “CHD” instead of congenital heart defect or congenital heart disease, and get irritated when people ask if CHD stands for coronary heart disease.

3. You constantly find yourself saying, “I’m no doctor, [...]

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Valentine’s for a Cause: On the Day for Hearts, Learn About Screening Baby Hearts

On February 13, 2012 · 2 Comments · In Uncategorized

Cora’s Story and James’s Project are extremely thrilled to announce a webinar that will take place February 14 at 3:30 p.m. Expected to last about a half hour, moms, caregivers and anyone interested in learning more about screening for heart defects, the most common birth defect, are invited to attend. The webinar [...]

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How Do You Know Which CHD Organizations to Trust?

On January 2, 2012 · Leave a Comment · In CHD Organizations

Chances are if you or someone you know is affected by a CHD at some point you’re going to want to donate time, money or goods to an organization helping with some angle of congenital heart disease. I read a lot of updates accusing this organization or that organization of not helping.

I’m not [...]

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CHD Resources

On December 31, 2011 · Leave a Comment · In Resources

Rather you’re searching for a congenital heart disease support group or links to organizations funding CHD research, this is the section for you. A comprehensive overview of links to CHD sites, including both reputable medical resources and blogs of people affected by CHD.

The CHD Blog Directory

Support and Parent or Patient-led  Awareness Groups [...]

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