Wednesday, March 13, 2013


In February I wanted to do a post honoring congenital heart disease awareness month, but it didn't happen..... so here it is a couple weeks late.

I received this information in a news letter from the Erika Kate Foundation, which is a a very special foundation that offers support to families who have found themselves in the journey of congenital heart disease. I really like the information that they have summarized 
here to educate people about CHD's:

"5 Things You May Not Know About Congenital Heart Defects (CHD)

Read through these surprising statistics in honor of Congenital Heart Defects Awareness Week

1. Defects Are Often Symptom-Free:  CHD symptoms can be difficult to detect. Most serious cases, especially with newborns, may involve lethargy, poor circulation, rapid breathing, and a bluish tint to skin, lips and fingernails.  A heart murmur may also be the first sign of a heart defect.  Click here for a more comprehensive list of symptoms in children of all ages.

2. There are several types of CHD: The areas of the heart impacted can vary substantially, along with the procedures to repair the heart.  Click here to see diagrams of the most common forms of congenital heart defects.

3. CHD is the most common birth defect:  Approximately 40,000 babies are born with CHD each year.  In the U.S., nearly twice as many children die annually from CHD than they do from all forms of childhood cancers combined.  Estimates suggest about 1,000,000 Americans have a congenital heart defect.  Click here for sources.

4. Diagnosis may require many tests: Just one of these tests is a lot for any child or parent to endure.  They may include an echocardiogram, a cardiac catheterization, x-rays, MRIs, and stress tests.

5. CHD is very expensive: The total annual cost of the surgeries in the US to repair or palliate CHD's alone exceeds $2.2 billion every year. The dollars that families spend in long hospital stays, temporary housing, transportation, days off work, and more related to their 

child’s illness are innumerable. "

I hope and pray that although so many babies and children are diagnosed daily with a CHD that as modern medicine continues to find ways to save their lives, that people can become more aware of CHD's which will save children from going undiagnosed. The "heart world" is not a world I would wish upon anyone, but I do hope I can share awareness and hope through our experiences with those who find themselves in our world!

I also want to honor 2 of our heart hero friends in this post. Both of their families are in need of prayers of comfort and strength.

My heart is very sad to watch yet another one of Mason's sweet little heart buddies earn her angel wings. Beautiful Kylie returned home to Heavenly Father after fighting a long hard fight with a very sick heart. She had been waiting 10 months for a Life saving heart transplant. Sadly her body became too sick to wait any longer. Heaven is definetly sweeter now, but Kylie will be greatly missed! Please pray for her family's comfort in these difficult days ahead. Also please consider becoming an organ donor today in honor of Kylie.....(Click here to become an organ donor)


To read Kylies obituary click here and for her blog click here.

Megan is a very sweet 20 year old (she's turns 20 this month) who has had many health challenges her life. She had cancer as a young girl and then received a heart transplant as a 15 year old. She now is in need of a second heart transplant, but sadly due to some other health issues Utah transplant centers have denied her the chance to be relisted. This news hits so close to home with me, because almost 3 1/2 years ago Mason was also denied here in Utah to be listed for a new heart. As most of you know I didn't give up and was able to find a transplant center that would (We love Lucille Packard Children's Hospital at Stanford!!!) give Mason a new heart. Please pray for Megan and her family at this time as they are searching out other options and transplant centers for her.


To read Megan's blog click here.

To all of our heart hero buddies out there,
We love you and pray for you each and everyday!
Love , Miracle Mason and family

"The tests of life are tailored for our own best interests, and all will face the burdens best suited to their own mortal experience. In the end we will realize that God is merciful as well as just and that all the rules are fair. We can be reassured that our challenges will be the ones we needed, and conquering them will bring blessings we could have received in no other way." ~ Jeffrey R. Holland

1 comment:

TheCorbinStory said...

I am a heart mom to angel Corbin. I found your blog when my Google alerts sent me this blog post.
Thank you for spreading awareness! Your heart warrior is an inspiration and adorable at that :)

My Corbin had aortic and pulmonary stenosis, on top of an IAA, ASDs, VSDs, DORV, and Long QT Syndrome. His doctors told us that if they had no other choice, he would need a heart and lung transplant. But we never had to make that decision.

I'm now following! Please read more about Corbin over at: