This week is Congenital Heart Defect Awareness Week! Each day I will post something about CHD's and how they have affected our lives. Please support Tucker and his friends by sharing these things, sharing the link to our page, and by posting encouraging words in our guestbooks.
CHD Awareness Week, Day 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.
- 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.
- 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 40,000 babies are born with a defect each year. Tucker has Hypoplastic Left Heart Syndrome (HLHS) and it occurs in 4-8% of babies with CHDs.
- 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.
- 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. The easiest way to know for sure is to have your baby's blood oxygen levels checked. All new parents should ask for this to be done immediately after birth and then again after about 24 hours of life!
- 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 CHDs in the United States each year as die from all forms of childhood cancers combined. (author's note....Can you believe this statistic?? Another fact is that 5 times the amount of money spent on CHD research is spent on childhood cancer research!!) 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.
- 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%.
CHD's are everywhere! I cannot tell you how many people that we have met, that when they find out about Tucker, they know someone who has a CHD or had one themselves! So, why do people not talk about CHD's the way they do about the other childhood diseases/disorders???
The fundraiser that we had at Durkin's Pizza tonight was awesome. The owner of Durkin's said that they had never had that many people eat on a Monday night before and they had definitely never had that many people at a fundraiser. The food is awesome, so you should check it out sometime. We will probably be having some more events there in the future, so join us!
Don't forget to help us raise awareness!!!
With love & Heart Hugs!
Trent, Dena, & Tucker