Monday, May 24, 2010

Congenital Heart Disease..Please read, it could save a life!

A heart friend of mine that I met last week (whom I know wasn't by accident, she is such an awesome woman) sent me this story of a baby named Cora who passed away at only 5 days of life in the arms of her mother from an undiagnosed case of congenital heart disease.

Reading this story made my heart sink knowing this could have been my little girl too. It's so hard to understand how she was seen by 4 different doctors to check her heart at the hospital and at her first check up and no one picked up on it until I took her to urgent care for something unrelated.

The same thing happened to my friend Rhonda and her son Zeb. She knew something wasn't right with him from the time he was born cause his nail beds were blue and also his feet. She mentioned this 2 times at the hospital and was told that it was normal for newborns to have that and was sent on her way without a pulse ox test. Four weeks later she noticed him being unusually fussy at night (alot like Berlyn ) she noticed him sweating and breathing funny. She called and spoke with the ER and was told that it was probably a stomach issue and to follow up with her Ped. Thank God for her Mommy instinct she took him in and as soon as the doctor saw him he knew something wasn't right. They called 911 right away and he was taken to a Children's Hospital where they diagnosed him with Severe Aortic Stenosis (same as Berlyn) and they were told if it was another hour or two they would have lost their precious son. He again had to have the same procedure Berlyn had only another 4 weeks later after the first one. Zeb had to not only go through those 2 procedures at his young age but he also had to have open heart surgery on his 3rd birthday almost 3 months ago. What a strong little boy. Rhonda has been such an inspiration to me and someone who has the same beliefs as I do. I'm sure she is probably sick of all my questions I've thrown at her this past week. :)

Why am I bringing all this up you ask? How might this effect you? Well I will tell you why! I have pretty much worn out my computer reading up about this and I wish I would have known more not only before I had Berlyn, but before I was even pregnant with Aven. I think if women were more aware of this it would save ALOT of babies. If you are pregnant, plan on being pregnant, know someone who is pregnant, or you are a father you need to know about this. Both of us were blessed to be able to find out about our babies but alot of parents are so lucky and their precious babies end up dying in their sleep.

Impact of Congenital Heart Disease

* Congenital Heart Diseases are also known as congenital heart defects. Over 30 known congenital heart defects exist.

*Often the abbreviation, "CHD" is used to refer to congenital heart disease.

*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, I've seen it as high as 1 in 70.
How do you know if your baby is one of the 1 in 100?
*Some CHDs are picked up in utero by an regular ultrasound
*Others can be picked up by a level 2 ultrasound
*Some say a fetal echo cardiogram should be conducted on every mother and child to test baby heart.
*Others want an echo cardiogram, test that uses sound waves to get a picture of the heart, for every newborn.
*Cora's Mom is in the stage of lobbying for Cora's Law which would be a standard screening for newborns for a pulse oxy test on every baby. This test is cheap, quick, non-invasive.
What can you do?
* Until pulse oxy 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.
*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.
I never in my life would have ever thought I would have to go down this road and be researching this stuff. Since I am going down this road I want to be used to be able to help other Moms who may be going down the same road and be able to reach out to them. If you know something doesn't look right with your baby or you have a gut feeling go with it and make sure you question those doctors and don't just walk away if you know in your heart they are wrong. It could save their life!


Morrells said...

It is so amazing how our eyes have been opened! It is crazy to me that both you and Rhonda's babies had to go undetected for so long! Thank you for sharing all this!

Valeria Gonzales said...

Thanks for the Informative information, I will definitely keep this in mind and pass it ago.

annamarie said...

You hit the nail on the head Brianna. I know Cora's mom too - and she is amazing. Spread the word - save a life. Good things are happening that will soon make pulse ox screening routine for all newborns. For this I am grateful - and I know all the mess our baby Eve endured was worth the change. Good to know you - I've shared your smart words on too. Lots of great heart families there. :) Thanks! Annamarie

Kristine said...

Thanks for sharing Cora's Story. It's becoming a small CHD world, we're all connecting in so many ways. I'm Cora's mom, and I read "this happened to us," or this "almost happened to us" so many times a day. Change is coming and I'm so glad we're all finding each other and uniting to create a community that spreads the word. Much love, Kristine

Brianna said...

Kristine: Thanks for writing. I admire you so much for all you are doing to get the word out about this. Your daughter is such a precious gift! Such an awesome way to honor her.

Heather said...

Thank you for the information! We will never stop worrying about our kids, but it's nice to know info like this to help! Berlyn is a blessing and I pray she has a healthy little heart :)