Congenital Heart Defects (CHD) Awareness Week

Our Madeline was born with severe congenital heart defects (CHDs): Total Anomalous Pulmonary Venous Return (TAPVR), and Hypoplastic Left Heart Syndrome (HLHS). You can read about this amazingly strong little girl and her story here.

This week is CHD Awareness Week and all of February is Heart Awareness Month. The CHD Awareness website provides more information about how you can help the cause.

This issue continues to touch us personally and deeply. Maddie is not out of the woods, nor will she ever be. She is scheduled for more intensive cardiology testing at the end of this month and late March, in fact (more details in a later post). We will always be coping with her CHDs.

Maddie is a fighter. She is strong and stubborn. It’s what keeps her going when she should be down. But even with that same fighting spirit, some children don’t make it. Some are taken from this earth because of CHDs and we’re left to grieve the loss.

That’s what happened last week to someone I know personally. Her precious son lived for 4 days and then passed away quietly in her arms after suffering from heart failure. I wept for her and her pain. She is not alone in her anguish. Thousands of mothers every year are mourning the loss of their little heart babies and children, too.

So, it’s with this sweet boy in mind that I share these statistics in the hopes that it could save the life of at least one baby out there. Please read and spread the word.

Facts about CHDs as noted by Little Hearts, Inc.:

  • Congenital heart defects (CHDs) occur when a baby’s heart fails to form properly during early pregnancy. In most cases, the cause is unknown, although scientists feel both genetic and environmental factors play a role.
  • Some environmental factors that increase the risk of CHDs include the mother’s use of cocaine, alcohol or certain medications while pregnant. Some maternal medical conditions – such as diabetes – may also increase risk.
  • CHDs are the most common birth defect – and the leading cause of birth defect-related deaths.
  • CHDs occur more often than Spina Bifida, Down Syndrome or hearing loss – and kill twice as many children as childhood cancer.
  • It is estimated that 40,000 babies with CHDs are born in the United States each year – that’s one in every 125 babies.
  • Although some babies will be diagnosed at birth, newborns are not routinely screened for CHDs – and pregnant women are not routinely tested for CHDs.
  • There are approximately 35 different types of congenital heart defects.
  • Some CHDs may be treated with surgery, medicine and/or devices, such as artificial valves and pacemakers. In the last 25 years, advances in the treatment of heart defects have enabled half a million U.S. children with serious CHDs to survive into adulthood.
  • Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and childhood-onset heart disease.
  • Early detection is critical to the successful treatment of CHDs. Some heart defects can be detected by a routine ultrasound – but the most effective prenatal test is an echocardiogram performed by a Pediatric Cardiologist.

4 thoughts on “Congenital Heart Defects (CHD) Awareness Week”

  1. One of our twin boys is a “heart kid.” He was born with two ventricular septal defects (VSD) each a different size. He has had a very difficult time gaining weight and eats all the time to just maintain his weight. Given where his VSD’s are located, he will most likely have surgery sometime this year. We get to find out more next month.

  2. I didn’t even know it was CHD Awareness week. It reminds me to be thankful that my CHD just means a once a year check up with my cardiologist and a few extra appointments during pregnancies. Modern medicine is such a blessing–I hope Maddie’s can get taken care of well too.

  3. Oh, I am SO sorry to hear about that precious 4-day old. That must have hit way too close to home for you. Thank you for raising my own awareness, and for the reminder to keep little Maddie in my prayers. She is a fighter for sure, and so is her Mamma!

  4. I’ve thought about this week all month and have been wanting to get a post up about it…I appreciate this post, and ache for the people you know that just lost their precious baby through suffering. We are so very blessed by modern medicine and it’s amazing to read the statistics and realize just how prevalent it really is. Bless, bless, bless these heart babies!!!

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