Tuesday, February 7, 2012

Once a Heart Mom...

After Charlotte earned her wings, I struggled (and still struggle) with lots of things...

Questioning my faith.
Jealousy.
Learning how to live again without my little girl.
Trying to laugh or smile without an accompanying feeling of guilt.
Learning how to...well...function!


But there is also a struggle that I've never really talked about here before (and one that has my eyes filled with tears just thinking about)...


I continually struggle to figure out how I fit in.

I'm a mother with no visible child.  A heart mom without a warrior to fight along side.  
A mommy to an angel.


For almost a year and a half I was 110% immersed in the heart world.   I dedicated myself to researching and learning all that I could about CHDs.  I reached out to other families who had been down the road before me, as well as to others who were just starting their journey.  There have been countless hours spent in hospital waiting rooms, the pediatric intensive care unit and doctor's offices.  I have seen my daughter sedated, paralyzed and intubated on more than one occasion.  I have literally seen her beating heart through her open chest.  A heart mom's normal is different than most... 


Then all of a sudden I woke up one day and my little girl was gone.  Her crib sat empty and I was left wondering....


"Now what?"


How could I possibly relate to other moms? 
Would heart families be scared off because our story has the ending that they live in fear of  
EVERY. SINGLE. DAY.?
Would all of the incredible people we met along the way--heart families, doctors, nurses--simply move on like we never existed?
Would the heart world just keep on spinning, leaving us behind?

I think that these thoughts will always be in my mind to some extent, but I'm slowly learning how I fit.  I'm discovering who I am and finding new ways to stay a part of the community that has been so very important to me.  My heart family is still intact and surrounds me with LOVE and SUPPORT like only they could.  I'm doing things to honor Charlotte, keeping her memory alive and trying to give back to those who gave so much to us. 

A part of my responsibility as a heart mom is to make sure that all of YOU are informed--keeping you up to date on issues like CHD screening in newborns and spreading general awareness for America's #1 birth defect.  You knew I would get to my point eventually, right?!

February 7-14 is Congenital Heart Defect Awareness Week and I thought that I would take the opportunity to share some CHD facts, as well as some amazing stories with you!


Get educated - have a voice - spread awareness!
(CHD facts provided from The Children's Heart Foundation)

Incidence, Morbidity & Mortality


•Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
•Congenital heart defects are the #1 cause of birth defect related deaths.
•Congenital heart defects are the leading cause of all infant deaths in the United States.
•Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.


Lifelong Disease


•Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
•There are an estimated 2,000,000 CHD survivors in the United States.
•For the first time, more than 50% of the CHD survivors are adults.
•10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.


Economic Factors


•91,000 life years are lost each year in this country due to congenital heart defects.
•The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.


General CHD FACTS


•More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
•There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
•In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.


Research Allocations & Impact


•Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
•Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
•Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
•The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
•In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

5 comments:

  1. Kristen, you ARE a heart mom. I don't have the right words, but you, Charlotte,and your journey will NEVER be something that is forgotten.

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  2. Once a heart mom ALWAYS a heart mom. You provide encouragement to me by sharing what your baby girl went through and what you go through now. As heart moms we all live with this fear and watching you walk this road gives me hope that if God were to choose to take my son home, I could learn to continue the journey just as you are. (((Hugs)))

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  3. You are 100% for sure a Heart Mom and always will be a Heart Mom. {{{HUG}}}

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    Replies
    1. You are an incredible advocate, and I will do everything I can to help you spread awareness : )

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