Tuesday, November 30, 2010

The Mommy Pages Part VI - Cora

Who is Cora? Cora was a beautiful baby only on this earth for 5 days, she died suddenly and unexpectedly in her mother's arms of an undetected congenital heart defect (CHD) while breastfeeding, but she continues to touch and save lives. 

I learned of Cora last December over Twitter. I was heartbroken by her story.  Her mother Kristine has been working endlessly to educate others about CHD so that no other mom should have to learn about CHD from a coroner.  She does this in many ways. On the 30th of each month is Wear Pink for Cora Day it is a day for you to take a moment and do a good deed, it can be a simple deed or a large one. Over the past year Kristine has spread the word of CHD, helped out single moms, ER hospital staff, and breastfeeding moms to name just a few. 

A simple non-invasive pulse oximetry test done on your baby before you leave the hospital could save your baby's life so speak up and ask for one. Awareness is key so please learn about CHD and help spread the word.

The following information about CHD comes from Kristine's blog Cora's Story.

Impact of Congenital Heart Disease
  • Congenital Heart Diseases are also known as congenital heart defects. Over 30 known congenital heart defects exist.
  • According to the Children's Heart Foundation, CHD is the Number ONE baby killer.
  • CHD is also the most prevalent birth defect, according to the March of Dimes.
  • About 1 in 100 babies are thought to be born with the birth defect in the United States. Different organizations use a different number.
How do you know if your baby is one of the 1 in 100?
  • Some CHDs are picked up in utero by a regular ultrasound.
  • Others can be picked up by a Level II ultrasound.
  • Some say a fetal echocardiogram should be conducted on every mother and child to test baby hearts.
  • Others want an echocardiogram, test that uses sound waves to get a picture of the heart, for every newborn.
  • Right now, Cora and Kristine lobby for a pulse oximetry test on every baby. This test is cheap, quick, non-invasive and should be standard in newborn screening. A couple of groups are working on making this test standard. In Missouri, Kelly from CHD Babies is working for Chloe's Law, making pulse ox mandatory before discharge. 
  • If you're pregnant, use the Earth Mama, Angel Baby birth plan creator, it includes getting the pulse oximetry test for your newborn and reminds you to do so after birth.
  • Some CHDs can't be detected by known methods. So much more research is needed. Spreading awareness leads to more research funding.
What can you do?
  • Until pulse oximetry tests are standard. You can tell mothers and fathers to ask their doctor to run a pulse ox on their newborn between 24 to 48 hours of age.
  • Kristine developed this flyer for pregnant woman, for you to look at and pack in your hospital bag.
  • Spread the word. Awareness means more support for much needed research funding. Awareness means less mothers and fathers will find out about CHD from the coroner.

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