Submitted by Barb Kohler.
February 7-14 is Congenital Heart Defect Awareness Week. Most people are unaware that congenital heart defects (CHD) are the number one birth defect in the United States, yet 1 in every 110 (40,000 annually) are born with one or more CHDs. Of those, 25% will need heart surgery or medical interventions just to survive. Today, 2-4 million Americans are living with CHD with more than half of those being over the age of 18. Although treatment options are improving for this population, CHD remains a leading cause of death for children. CHD is not just a birth defect, but a life-long condition requiring specialized care and regular monitoring to reduce any risk of developing heart disease as they age as well as possible heart transplant.
This is a very personal issue for me and my family as my grandson was born in 2019 with 5 congenital heart defects. There is no adequate description of the emotional, physical and financial toll this can take on a family. Fortunately there is support through Mended Little Hearts (www.mendedlittlehearts.org), and there is also promising research, but much needs to be done. In my grandson’s first year of life, he endured:
- 2 resuscitations
- 2 blood transfusions
- 2 blood clots
- 3 surgeries (2 additional invasive procedures)
- 10+ ultrasounds (cranial, legs, abdomen)
- 12+ echocardiograms
- 35+ X-rays
- 35+ nights in the hospital
- 40+ appointments (doctors, therapies, etc.)
- 300+ needle pokes (medications, vaccines, blood draws, IVs, etc.)
- 2500+ doses of medication
- countless beeps from monitors and/or pumps (day and night every day)
Today my grandson is thriving! Next month he will turn 3 and even though he is still on a G-tube and lots of medication, he is a happy boy that doesn’t know he has so many issues. Another heart surgery is planned for the summer.
Awareness about CHD is vital to making a better life for children and adults living with CHD. Through early detection and diagnosis, better treatment options, and CHD research, these children and adults will have a far better chance of living longer, healthier lives.