International Children's Heart Foundation

guest post from Charles F. Miller, International Children's Heart Foundation, www.BabyHeart.org

 

1,000,000. That’s a BIG number. 

1,000,000 …  what?  Dollars?  Miles?  Minutes?  Pounds?  Think about it. 1,000,000. BIG.

We are talking about Children. 1,000,000 children are born each year with a congenital heart defect (March of Dimes Report*).  This makes it the Number One birth defect. Did you know? That’s 2,740 children born around the world each day with a heart defect.

The University of Michigan Football Stadium is the largest in the USA and holds 107,000 people. Fill that huge stadium up over 9 times….each year…with newborns…all suffering from a congenital heart defect.  As a point of reference, 207,000 people were diagnosed with breast cancer in 2010 (National Cancer Institute*).

There is an organization really making a dent in the problem around the globe. The International Children’s Heart Foundation (ICHF) has a mission of: bringing the skills, technology and knowledge to cure and care for children with congenital heart disease to developing countries. ICHF does this regardless of country of origin, race, religion or gender. Additionally, ICHF actively trains the local medical personnel so they can build their own self-sustaining pediatric cardiac center and ICHF can go away and help other countries. In 2011 ICHF is operating in the following countries: Honduras, Nicaragua, Dominican Republic, Brazil, Ecuador, Egypt, Ethiopia, Iraq, Ukraine, Belarus, Russia, and India.

ICHF will operate on about 900 children this year across the globe. Is that significant or too small a number? It is significant for those kids and their families. Also, by building self-sustaining programs in these under-developed countries more and more children will be saved year after year. That’s what it takes to make a difference --- teaching others to do it themselves.

The children in these poor countries do not have a chance because there aren’t typically any physicians who have been trained in pediatric cardiac surgery. The children may also live very far away from any medical facilities. Often the parents are told to take their child home and love them as long as they live.

In the United States we are blessed to have so many facilities available that can help our children who have congenital heart defects. We feel that it is our obligation to help those less fortunate.

*http://www.marchofdimes.com/downloads/Birth_Defects_Report-PF.pdf

* http://seer.cancer.gov/statfacts/html/breast.html

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Taking CHD submissions until the 15^th of February so that we can include as many “faces” as possible. (To submit a post email faith (at) heaveninourhearts (dot) com.)

Benji's Heart Story... #CHD

When Benji was born there was no idea in our head that there would be anything wrong. His apgar scores were good and he was a good size, although he was easily the smallest of my four. Mommy intuition kicked in though, I knew something was wrong. My other three babies had been tanned and Benji had a bluish appearance to me. (The nurses said he was normal color, except for his feet) He didn't want to nurse though and that kept my concern for him high.

It was the next morning that we knew something was definitely wrong. Benji had not nursed at all and didn't take a bottle either. When the resident pediatrician checked him out he heard an "odd" murmur. In light of the not nursing and the murmur, a pediatric cardiologist was called in to check on him. That's when our world was turned upside down.

After hours of waiting and trying to take in what could possibly be wrong, we got the news. Benji had CoArctation of the Aorta and a Bicuspid Aortic Valve with a thickening of the wall (stenosis). The doctor immediately put him on medication to keep the ductus arteriosus open, or patent. Before we could even really take in what was going on, Benji was on his way to the Children's Hospital and into the NICU.

There were many terrifying hours over the next seven days. When Benji was a week old he had what they call closed heart surgery. They were able to repair the coarctation, or the narrowing, of the aorta by using the subclavian artery. At that point, it was decided to leave the valve alone. His recovery from the surgery was excellent, he went home five days after.

We were told that Benji would most likely have to have another procedure by the time he was two.  This has not been the case. While Benji does still have the bicuspid valve and we do have to keep close tabs on him, he has thrived and exceeded expectations. Benji will be six on March 2, and is on no medication for his heart.

In relating Benji's story, we know that we are one of the lucky ones. We have shared the sadness of others that were not as fortunate. This is why we feel that we have no choice but to bring attention to Congenital Heart Defects.

We praise God for Benji's health and we pray that with more attention, there will be more survivors.

Congenital Heart Defect Awareness Month

February is National Heart Month. It is when the American Heart Association chooses to make an active campaign about heart related illnesses. The Congenital Heart Defect Community has also claimed February for CHD Awareness in order to bring attention to the many children born with heart defects. 

Congenital Heart Defect Awareness is a passionate advocacy for us since Benji was born with CoArctation of the Aorta and Bicuspid Aortic Valve with Stenosis. We are blessed that Benji is with us and thriving, there are many babies throughout the world born with heart defects that do not survive.

Our hope for the month is that we can bring heart stories to the forefront to give congenital heart defects a face.  We also hope to point out some resources for support and advocacy within the CHD community.

After much thought, we have also decided to take CHD submissions until the 15^th of February so that we can include as many “faces” as possible. (To submit a post email faith (at) heaveninourhearts (dot) com.)