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.
Good informative letter. 👍 ⅞
Barb, thank you for sharing. To add to your reasons for hope: Our son, Jerry, was born with a hole between the lower chambers of his heart. Except for the operations, we went through many of the experiences/ordeals that you described. Jerry, still has the defect, but also managed to earn two Finisher ribbons at the Iron Man Canada in Penticton, spent a decade with the FBI, and retired from the State Department, and is now working toward his RN license. Someday, you’ll be enumerating your grandson’s accomplishments as well. There’s something very healing about a grandparent’s love.