CHD Awareness Week

In 1976 my parents had to lay their eldest daughter to rest. She was born with a hole in her heart in the early 1960s. The hole never closed on its own and the prognosis for a child with that condition at that time was never good. My mother was told she would live one year at the most. My mother did the natural thing and babied, perhaps spoiled that child who it seemed would never die despite being puny and frail. She was my mother’s favorite because she was resilient and sweet.

In the mid-60s my father met my mother who was then a single mother with three kids and also fell in love with this resilient, tiny girl who was 7 at that time. She had lived 6 years past her expiration date (according to the doctors). He fell for my mother and her children and like my mother spoiled this child. She was schooled at home via a telephone for a special class of terminally ill children who could at least talk to each other, she was apparently the ring leader for the chocolate milk breaks. She played piano and Ragtime was her favorite piece. She named my older sister, Maia, based off of one of her favorite books, Thumbelina, because that is the new name suited for a tiny princess.

My sister Lennie, or Carolyn Ann if you want to get technical, brought a lot of inspiration and light to my family. She was supposed to die before her first birthday but survived SIX open heart surgeries before she finally passed at the age of 15 from her congenital heart defect (CHD). This was a child of the 60s and 70s when modern medicine essentially handed CHD children a death sentence.

We are decades away from that time but still many children are affected. It is not always a case now where modern medicine hands children a death sentence after a diagnosis but for many parents they are unaware that their children even carry a CHD condition. This week, 7-14 February 2010, is Congenital Heart Defect Awareness Week and meant to inform people that this suite of conditions exist and that action can be taken to help children who carry them.
If you do not think CHD affects you or your family then you may want to visit the Congenital Heart Information Network and become a little more informed of the statistics. One of 100 babies is born with a CHD. I am not writing this to be a jerk and scare you, but make you aware that CHD is something for parents to keep on their radar.

I have made an online friend with Kristine who had to lay to rest her daughter, Cora, just over two months ago. Her daughter seemed perfectly healthy and died 5 days after birth with an undiagnosed CHD. Kristine has shown astounding strength to now become a vocal advocate for CHD Awareness. I urge you to visit her site and/or communicate with her if you have any questions or are already involved in this campaign. She now devotes much of her energy to urging new parents to request a PULSE OXIMETER TEST to be conducted on their children 24-48 hours after birth to detect CHDs. The test is rather inexpensive but she believes it would have saved her daughter’s life if her and her husband were aware of Cora’s CHD.

Be aware of Congenital Heart Defects in your family. If you have a family history of them like I do get an echocardiogram when the baby is 22 weeks in development to check on the heart structure and function. If you have no knowledge of a CHD in your family history get a pulse oximeter test 24-48 hours after the child is born. If you do have the misfortune of having a diagnosis in your family connect with national and local networks if you need help. This is 2010, there is no reason these diseases should go undetected and/or untreated.

My echocardiogram is scheduled for 24 February, I am hoping for a good prognosis and will blog about the process for those of you that are curious.

If you are in the Colorado Front Range and are looking for a local resource go to Gabriel’s Gift. This organization is also putting on the 1^st Annual Denver’s Day for Hearts! to raise CHD Awareness on 13 Februrary 2010.