It's About Time

Time is one of things like most people, I am short on. Between family and work, beginning graduate school, and having some sort of personal life, I have found that I have less time to explore the many topics on HLHS that I want to.  I’ve decided to prepare an entry only once a month now for this blog and in tough times during exams, every other month, so that I can maintain the balance I need in all aspects of my life.  It has been almost a year since my very first post, and I feel that I haven’t even touched the surface of HLHS in a child today so I’m not giving up – I’ll never do that, just refocusing a bit. 

When I look back over the past year, I am sweetly reminded that we have reached another milestone – Carter has a birthday tomorrow, he will be 8 years old. The memories of those many weeks in the Cardiac Intensive Care Unit for each surgery have slowly receded in my mind; not forgotten, but now just a vague cloudy recollection of a time best left in the past. Today I focus on the smart, lovable boy who loves to play soccer, loves his hermit crabs, loves to read and loves to play video games.  

Over the past year I have connected with many parents of children with HLHS. Everyone says the same thing – We wouldn’t have it any other way, I wouldn’t change a thing.  I understand this, I really do, but parents in the future will have options we never had – fetal intervention and gene therapy.  And someday, just maybe, HLHS will not be the most common cause of death from cardiac defects in infants.

I'm Seeing Red!

CHD Awareness Week February 7-14!

How will you spread the word?

Maybe you don't have the time to organize a heart walk or a health fair or school presentation - but here are a few ideas that only take a few minutes and some of them can even be done waiting in line at the grocery store! 

• Wear red!
• Call your local radio station and ask them to announce CHD Awareness week.
• Compose a brief newsletter with CHD facts and send it to all of your Email contacts.
• Tweet to all of your followers.
• Go to your Facebook page, change your profile picture to a CHD symbol and Post a message about CHD. 
• Join a group like Mended Little Hearts, the Congenital Heart Network
• Mail Valentines Cards with a CHD sticker to all of your friends, family, and neighbors.  
• Talk to anyone who will listen and tell them what you know about CHD’s.  
• Share your personal CHD story – Go ahead – You’ve Earned It!
• Ask your local girl scouts or boy scouts to make a heart craft and earn a heart badge.
• Cook a heart healthy dinner – All Week.
• Post a Blog on your website about CHD.
• Make a Donation to your favorite "heart" organization. 
• Give blood! There are many drives scheduled in your area during CHD week. 
• Organize your own blood drive. Blood is a precious commodity to those having heart surgery.

 CHD Facts

1. What is a congenital heart defect? CHD’s are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware she is pregnant. Defects range in severity from simple to problems, such as “holes” between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.
2. Who is at risk to have a child with a congenital heart defect? Anyone can have a child with a congenital heart defect. Out of 1000 births, 8 babies will have some form of CHD, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.
3. How many people in the United States have a congenital heart defect? Estimates suggest that about 1,000,000 Americans have a congenital heart defect. Approximately 35,000 babies are born with a defect each year.
4. Why do congenital heart defects occur? Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.
5. How can I tell if my baby or child has a congenital heart defect? Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.
6. How serious is the problem? CHD’s are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from CHD in the United States each year as die from all forms of childhood cancers combined. Over 91,000 life years are lost each year in the US due to congenital heart disease. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone.
7. Are things improving? Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30% and today it is around 5%.

There are so many things we can all do to raise awareness.  Most people don’t know that congenital heart defects are the most common defects in the United States. An estimated 1 in 40,000 babies - 1 in every 100 infants, are born with a CHD and some are not diagnosed until years after birth.

Let’s help spread that awareness.