Happy Valentine's Day!
Today is the last day of CHD Awareness Week but it is not the end of learning about CHD and doing what you can to spread awareness.
Research is the number one way that CHD Awareness will continue to grow. In fact over the last decade death rates for CHD have declined by almost 30% due to advances made through research. Even though we have made advancements in the last ten years research continues to be grossly under funded.
One of my favorite organizations that is solely commited to CHD research funding is the Children's Heart Foundation. It is a great organization to donate to if you are interested in helping fund CHD research.
Another thing you can do is help to pass a bill that requires newborn screening using pulse oximetry. Pulse ox is a simple, inexpensive, non-invasive test that determines the amount of oxygen in a baby's blood and the baby's pulse rate. Low levels of oxygen can be a sign of a congenital heart defect. It is such an easy test that just requires a sensor to be placed on the child's skin (usually a finger or a toe) and it quickly measures the oxygen levels. We even have a pulse ox machine at our house for Stella (we rarely use it now but when she was younger she had to monitored most of the day). Although a pulse ox screening will not detect all CHDs, it is the easiest way to find out if more testing should be done. Currently only 9 states have legislation for Newborn Screening. Arizona (where we live) is NOT one of theses states and there is no reason that all 50 states should not require this test-the cost for a screening is so minimal. If you would like to request that your state require this simple screening you can contact your local March of Dimes.
There are also many numerous resources that families who are affected by CHD should be aware of.
Mended Little Hearts has groups nationwide that help to support CHD families. When we were in the CVICU they gave each family "hospital survival" bags and they have events for the families to get to know each other.
The Whole Hearts Foundation was founded by Matt Hammitt, the lead singer of Sanctus Real, to provide financial, emotional, and spiritual support to families of children with congenital heart defects. Matt Hammitt's son, Bowen, was born with Hypoplastic Left Heart Syndrome (HLHS) and he actually came and spoke at our church, The Grove, when I was pregnant. I remember listening to his story in tears and thanking God for giving us a healthy pregnancy and a healthy baby. I didn't think that I could handle having a child with CHD but God knew exactly what I could handle!
This song, All of Me, was written by Matt Hammitt about his son.
The Nick and Kelly Children's Heart Fund is a local Phoenix organization that helps to cover medical expenses of CHD families. We chose this organization to donate to for Stella's 1st birthday because all of the donations go directly to help Arizona families of children with CHD (many of the families that we actually met in the hospital.)
It is so important for any heart parents to connect with other families and there are so many resources that make this available. I am so thankful for the connections we have made with other families in similar situations. What a blessing it will be for Stella to grow up knowing friends who have been through some of the same heartaches and who have similar scars.
Here is Stella and Alexandra, another heart warrior we met through a heart mom group, celebrating Stella's first birthday.
I am really honored that YOU have chosen to take a week long journey with me to discover more about CHD but I urge you to learn more and look into what YOU can do to help us fight this incurable battle. As you see all of the pink, red, and hearts today in honor of Valentine's day I urge you to think about this post and what you are willing to do to continue spreading awareness.
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