It amazes me how often it is told about the statistics of heart disease and problems in adults. How awareness and research is raised for adults, while the children continue to be pushed into the background.
I have sent a letter to Oprah for the past 3 years asking for help to bring awareness to CHD. Never have I even gotten a response. I like to think that some desk monkey scanning the email is the one who never passes the idea or my letter to Oprah.
Each year, an estimated 1 in 100 babies are born in the United States with a congenital heart defect; CHDs are the most common birth defect and the number one cause of death from birth defects during infancy. Nearly twice as many children die from congenital heart defects as from all childhood cancers combined, yet research for cancer receives five times the funding. This is due in large part to the lack of awareness most people have about congenital heart defects.
When you see those two little lines on the home pregnancy test you are thinking about morning sickness, labor, diapers, breastfeed or formula, will I make a good parent? No one ever imagines that their thoughts would be consumed to echocardiograms, cardiology visits, medicine schedules, surgery, and the endless thought will my child die.
We lost our 3.5 month old daughter, Allison Grace, to complex CHDs on August 13, 2002. We endured 32 days in the Lutheran General Hospital NICU in Park Ridge, Illinois, endless doctor visits and watching our little girl fight through open heart surgery at 3 months old. We have lived through the horrible nightmare of burying a child, had our living children lose their innocence and endure the harsh realities of life at 3 and 6 years of age and somehow have managed to remain a family through it all.
We are just one story in thousands that need to be told. There are others, like us, who have lost children to CHDs. Some have children that have simple defects that may or may not need surgery, while others have children with complex defects that will need to endure several surgeries and years of medicines and doctor visits.
February 14 is "Congenital Heart Defect Awareness Day." Raising national awareness about Congenital Heart Defects is important on many levels—it will provide hope for families of CHD survivors and comfort to those whose loved ones have lost their battles; it will inform the general public about the symptoms of CHDs and possibly save lives; and it will affirm the need for researchers and medical professionals to continue their work to improve the outlook for CHD patients. Covering this important day on your show would achieve all this, and more.
I am asking the Oprah show to honor families of children and adults with congenital heart defects and the professionals who work with them, and to help remember the memory of lives lost. I would love to share my story and the memories of my little girl with your viewers in hopes to raise CHD awareness. Please feel free to contact me via email, XXX , or via telephone, XXX, to discuss this further. Thank you for your time and consideration.
So my call to action is this. Think about helping to bring awareness to CHDs this February.
- If you blog, please make an entry helping to raise awareness. You can even link to this entry.
- Place a button on your blog for the month.
- If you are looking to give to a charity, think about donating to one that supports CHD research, such as the Children's Heart Foundation.
- If you give to the American Heart Association, put "Zachary Brooks Foundation" in the memo designating that your funds will go to a foundation set up specifically for CHD heart awareness.
- Wear read on February 14, not to represent the chocolate and roses, but to remember those who are affected by CHDs.
- And if you have children, hug them a little tighter and thank God for the miracle and wonderful gift you have been given.
This post has been made in loving memory of Allison Grace Jacobs.