Mama in the City

A blog about raising my family in downtown Vancouver

Cora's Story: A Tale of CHD Awareness

On November 30, 2009 a sweet baby girl was born to new mama Kristine! A first time mum, Kristine had a long labor and went on to deliver a healthy baby girl named Cora. This is a moment she will never forget! Her and her husband took home their beautiful babe and enjoyed their little newborn. The following is an excerpt from Kristine's story:

"Cora died in my arms suddenly and unexpectedly while breastfeeding December 6. She was only five days old and was born November 30 just a few days before her December 4 due date. One moment I looked down and saw her peaceful face growing sleepy from breast milk. A matter of seconds later, and I looked down to a limp, pale baby, face covered in blood, with no movement. I screamed, jumped up and realized she wasn't breathing".

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How does a healthy term baby go from being well one moment to unexpectedly dying in her mothers arms the next? What key assessments were missed that might have helped diagnose and detect that something was wrong with Cora?

What Kristine didn't know was that baby Cora had Congenital Heart Disease. For Cora this was a completely undiagnosed, undetected heart condition that could have been potentially prevented. No one knew that Cora had CHD and no one screened her during any of the newborn assessments. Cora looked perfectly well and there are no mandatory routine guidelines around assessments to rule out CHD.

Here is what Kristine has to say on CHD and Cora:

"Through Cora, I've learned more about congenital heart diseases or CHDs and focus on sharing her story to raise awareness of CHDs, which is the number one birth defect."

Her goal is to, "... work together to make sure all babies get screened, raise money for more research to save more little ones, and support the hundreds of thousands of children and adults living with CHD".

Some interesting facts about CHD:

*According to the Children's Heart Foundation nearly 1 in every 100 babies born is effected by CHD. Making it Amercia's #1 birth defect.

*Simple non invasive pulse oximetry may help to detect low oxygen levels indicating complications of CHD. There are some pediatricians who do pulse oximetry on all newborns in their office visits but this is the minority for now.

*1 in 3 children who die from a congenital birth defect have CHD.

The more awareness about CHD means that more babies will potentially be screened and ultimately diagnosed and treated for CHD. So, this post is in support of CHD week and of course in celebration of baby Cora. Now you know about both CHD and Cora! Go and check out what Kristine is doing to raise awareness over at her blog or follow her on twitter. She is a true mother!



Kristine from Cora's Story said...

You told her story so well. Thank you. I'm weepy again. Thank you, thank you.

February 9, 2010 at 2:59 PM  
Mama in the City said...

Oh, I was so very happy to spread the word about Cora. :)

February 9, 2010 at 8:19 PM  
Mira said...

I have never heard of CHD before and I've learned it through this sad story. :/

February 11, 2010 at 11:54 AM  
gorillabuns said...

another truly heartbreaking story of another child who shouldn't be gone.

February 12, 2010 at 11:31 AM  
Mama in the City said...

I agree. Thalon and Cora should still both be here.

February 12, 2010 at 9:06 PM  
Mama in the City said...

I am so glad another person learned about CHD. Education is powerful!

February 12, 2010 at 9:07 PM  

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