The Children’s Heart Foundation is putting together a documentary on Congenital Heart Defects scheduled for completion in the winter of 2011.  It is being produced by TMK Productions out of Chicago and will be picked up by PBS.  TMK productions has produced Emmy Award winning documentaries and it is an incredible honor to have Ted Kay producing this.  Besty Peterson, founder of The Children’s Heart Foundation wanted to create this documentary to really bring attention to the world of CHD and to bring about a change.  Betsy knows all too well the impact that CHD can have on a  family after losing her own son when he was just a little boy.

Our family was fortunate to take part in this documentary and were chosen to be the featured family for the pilot that was shown for Lobby Day in Washington D.C..

You can view segments of the completed pilot on their website HERE.

You can visit our blog and read my post all about our experience being filmed for the documentary.  Here is the link to that post Part of Something Good. 

Stefenie ~ mommy to Wyatt and Logan (D-TGA, DORV, VSD, Pulmonary Stenosis and Right Aortic Arch survivor)

www.whenlifehandsyouabrokenheart.blogspot.com

“This is the front desk with your 3 AM wake up call.”

“What? I didn’t order a wake up call.”

“Are you sure?”

 ”I think I would remember requesting a wake up call at this hour.”

“Well, I’m sorry Miss but since you’re already awake I’d like to remind you of our complimentary breakfast that starts at 6 AM.”

Click

 Becoming a heart parent is like receiving that unwanted 3 AM wake up call. We didn’t ask for it to happen. In fact we specifically requested the 10 AM wake up call.

We feel disoriented as we are awaken from our peaceful slumber of cruising through life easily.

 “What’s a CHD?” we ask as we rub the sleep from our eyes. “The #1 birth defect? The #1 cause of birth defect related deaths? Twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined? I most certainly didn’t ask for that! I want my child to be healthy! Why didn’t I get the 10 AM wake up call instead?”

Pretty soon we are fully awake and trying to process how this even happened. “Why me? Crazy things like this only happen to the drunk dialer in the room next door who slurs his wake up call into the phone confusing the front desk. Not me! I followed all of the rules. I did everything right!”

Once the shock has worn off and somewhere before panic tries to fully set in we are provided answers to our questions. Our child’s doctor replies “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. More than 50% of all children born with congenital heart defects will require at least one invasive surgery in their lifetime. There are an estimated 2,000,000 CHD survivors in the United States.”

From there it is up to us. Do we get discouraged and slam the phone down so we can return to our slumber?

Or do we thank the front desk for the wake up call, take the complimentary breakfast and choose to stay awake…….to fight that sleepy feeling and do whatever we can to make sure that no other family has to receive that 3 AM wake up call.

Free Pamphlets I ordered through http://www.tchin.org/ to hand out for CHD Awareness week. Wyatt’s school included it in their elementary update and our pediatrician’s office has agreed to distribute them as well.

 •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.

•Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.

•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.

•Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.

 •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.

•Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.

•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.

Stef ~ Logan’s mommy

http://www.whenlifehandsyouabrokenheart.blogspot.com

Last week I sat at the foot of my son’s hospital bed watching him recover from his third open heart surgery.

At the tender age of three he has had to endure more procedures and surgeries than most adults will experience in their lifetime.

I have watched him suffer complications from all of his surgeries including focal seizures, bloody stools, an intubation airway injury and Dressler’s Syndrome.  Through all of theses surgical setbacks he has courageously overcome to win…..to beat the odds and survive his battle with CHD.

The latest surgery  is far from his last.  Due to a homograft/conduit to replace his pulmonary artery he will require additional surgeries in the future to replace it.  How many more will he need?  That answer remains unclear.  When he had his artery replaced during his Rastelli repair (at ten months old) we were told most likely it wouldn’t need replaced for five years.  We didn’t make it six months post op before things quickly went downhill.  With the help of a cath lab intervention he made it two years after his Rastelli before requiring surgery again.

During our stay this time a new family that we met stopped by our blog after we exchanged info. She commented to me on how normal our little boy looked in his pictures.  He didn’t look sick at all.

Normally that comment doesn’t bother me because ususally I am the one telling everyone how great he looks for someone who is so sick on the inside.  This time however the word normal stung a little. It had nothing to do with the new mom’s comments.  She was only being observant….he does look normal.

With CHD Awareness week just around the corner and my precious child fighting to overcome yet another post op complication I was angered.  Mainly I was angry because the outside world doesn’t see this when they hear the words Congenital Heart Defects.

Or this…..

Or this…..

Instead they only see this…..

…..the picture of a happy, vibrant, healthy, normal little boy.

I know that it is just another reason why CHD doesn’t receive the attention it so desperately deserves.  By all outward appearance our kids do look like they are the picture of health.  They don’t show their illness on the outside but instead hide it like a little secret within.

It can make it so frustrating at times to have our children and their stories ignored by the media because our children don’t appear to be the stereotypical sick child.

Our cause is just as important as other pediatric illnesses and genetic disorders.  These children deserve increased awareness and funding so they can have the best chance possible at living a normal life.

I hope that with CHD Awareness week fast approaching more families will step up their efforts to gain some ground in the fight….to allow our children’s stories to be heard.

Logan may  statistically be 1 out of 100 but he is #1 to us and we will continue to fight for him.

http://www.whenlifehandsyouabrokenheart.blogspot.com

Click the link below to watch a video montage I created last year for CHD Awareness week.  These kids are true heroes!