My Little Valentine: CHD Awareness Week

Yesterday was Valentine`s Day. This week is a special week for our family it is Congenital Heart Diseases (CHD) Awareness Week. As you know, if you have been reading my blog for any length of time our youngest grandchild was born with CHD, you can read his story by clicking on the picture to the right that says: Skylar`s Story.

I bought this necklace for myself and also bought matching ones for Skylar`s mother and my daughter to wear. I chose these specifically because Red is the Color for CHD awareness and the heart shape is quite obvious, but the one thing that drew me to these necklaces was the Angel Wings that envelop the heart. So I bought them to symbolize that Skylar is being surrounded by Angels who have him enveloped in their wings and are watching over him. I thought it very fitting to post this today considering CHD awareness week is coming to a close. All during the month of February we celebrate Congenital Heart Disease awareness.
Skylar turned 5 months old today. He has been in the hospital since his birth. We do not know how long he will remain there, he has had battle after battle. This week he spiked a fever which in turn made his heart rate accelerate, he is currently on steroids. When I last spoke to momma his fever had gotten a bit better. We are waiting on cultures to come back to see what explanation there might be for his fever. We continually ask for prayers and positive thoughts for him. No one wants to see someone they love struggle so. He is defintley a little fighter for sure.

For more information on Congenital Heart Disease in general there are several websites out there you can visit. Statistics by the Centers for Disease Control tell us that Congenital Heart Defects are the most common type of birth defect affecting children born in the United States. The Children`s Heart Foundation goes on to state that nearly 1 out of every 100 babies is born with some type of Heart Defect. The folks over at the American Heart Association state that according to the March of Dimes that over 25,000 babies are born each year with a CHD, which translates to 1 out of every 115-150 births, the odds of having a child born with CHD is higher than having a child born with Down Syndrome, the statistics for that are about 1 in every 800-1000 children are born with Downs.
Skylar was born without a Pulmonary Valve (APV) which means Absent Pulmonary Valve , he has a condition called Tetraology of Fallot or (TOF). APV is a condition in which the Valve that pumps blood from the right ventricle to the lungs is missing or absent.  We are not sure what caused Skylar to be born with TOF/APV he has also been diagnosed with a condition known as 22q11.2 Deletion Syndrome which means that he is missing parts of Chromosome 22 which in turn likely caused the TOF/APV. Now we do know that my husband carries part of the TOF Gene and that my husbands father was said to have been born a blue baby, which was an old medical term for a Heart Baby.  Skylar`s mothers family also has a history of loosing babies in early pregnancy that were later found to have had heart defects.
If you know anyone who has a CHD and would like to share their story with us please leave me a comment below. Spread the word about CHD, and I cannot express it enough. Please get your DNA tested and test those that you love, you never know when you might find out that you too carry the gene for CHD, be prepared! Happy Belated Valentines Day from my little Valentine (Skylar) and I.