CHD Awareness

This week (Feb 7th through 14th) is Congenital Heart Defect awareness week.  As you know from my previous posts about having a Heart Baby it is a subject very near and dear to my family.  We have been through a lot and want to make everyone more aware of this epidemic whenever we can.

I stole this from a facebook friend:

For those of you who have healthy heart children and do not understand why I keep posting so much about CHD Awareness Week, just try to imagine what we are going through for just a second.

Our babies have had their chest cut open, their sternum cracked in half, and their heart stopped for hours on end while surgeons try to correct their little hearts. Every second that they are in surgery, we ar…e shedding tears or fighting them back with all our might. When they are finally done, they come back to the intensive care room with a machine breathing for them and tubes coming out of every place the drs could possibly find to stick one-IVs, ET tubes, NG tubes, chest tubes, art lines, pacing wires, catheters, etc. They can’t talk or even move. You are helpless as you watch them lay there looking so pitiful. You stare at the pumps and machines, overwhelmed at everything they have going to keep your baby alive. As she (or he) starts to wake up, they moan and cry in pain. They can’t move, talk, or express what they are feeling. As a parent, you just want to scoop them up and say that everything will be OK. But the fact is that you can barely even touch them, let alone hold them. And how can you tell them that everything is going to be OK when you simply don’t know yourself?
It is one of the most helpless, awful moments of our lives as parents and only a portion of the battle.

Many of our children have multiple surgeries, treatments and procedures. The older they get, the more aware they are of what is going on, the worse it is for them, and for you as a parent. You become the “bad guy” – holding them down, letting hurtful things happen, all in the name of healing and so your child doesn’t feel like you abandoned her/him. You wonder if your child will grow up to go to school, go to dances, on dates, find a career. You wonder if not only will your child survive – but will you? CHD fact:  More children die from congenital heart defects than from all childhood cancers COMBINED!  February 7-14 is CHD Awareness Week, spread the word!

I have another fact for you.  X Games snowboarder Shaun White was born with the exact same heart defect that Avery was born with.  It is amazing to know that we can expect Avery to have such a full life and that the sky is the limit for his life!

Here is a longer list of facts:

• Congenital Heart Defects are the #1 birth defect worldwide
• Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide
• About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)
• Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday
• Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday
• The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year
• Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research
• Though research is ongoing, at least 35 defects have now been identified
• Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood
• It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications

I was also thrilled to hear that the state of MN is now working on requiring every newborn to have their oxygen level checked in the hospital.  This will not diagnose the condition but it will detect that there is a problem.  This is great news!  The earlier these are detected the better!

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