I had exactly no – zero – knowledge of congenital heart defects before Kiran was diagnosed when I was 22 weeks pregnant. A newborn with heart issues wasn’t something that was even on my radar. I had never known anyone born with a heart defect or who had a child with a heart defect.
When Kiran was diagnosed, I was thrown completely blind into a world I knew nothing about. And since then, I have made it one of my life’s goals to be sure that everyone I know – everyone Kiran knows – has an awareness of what CHD is all about.
1 out of 100. Congenital heart defects are SO prevalent. And SO underfunded. It is another reason I use this blog and my facebook page (especially during heart month) to increase awareness, understanding, and the necessity of research. Without the research that has already been done, Kiran would not be alive today. 1 out of 100 babies in the United States are born with a congenital heart defect; 25% of them will need a life-saving operation before they reach one year old.
Kiran is in that 25%; he was born with a critical congenital heart defect. 69% of babies born with a critical CHD – babies like Kiran – are expected to survive to 18 years of age. Do you want to know the importance of research in this area? Between 1979 and 1993, about 67% of babies born with critical CHDs survived to one year. Between 1994 and 2005, that percentage increased to 83%. I would imagine it has continued to increase in the last 14 years. (These statistics taken from CDC’s page on CHDs: https://www.cdc.gov/ncbddd/heartdefects/data.html – I would encourage you to click that link and read more statistics about congenital heart defects).
Though Kiran’s heart story, so far, has been relatively textbook – and his other diagnoses, more significantly impacting his daily life, are at the forefront of my mind instead – I will never take for granted the opportunity for life Kiran was given. His extensive, complex surgery – pioneered by his heart surgeon, Dr. Hanley – was unheard of 40 years ago. I don’t know exactly when Dr. Hanley began performing the surgery, but I know he completed his fellowship in 1988. There are new and exciting advances happening in the field of tiny hearts – I am just thankful Kiran was born when he was.
So. Educate yourself. Ask me any questions you might have. Share my facebook posts, CHD facts, my blog. Give to heart organizations that have a focus on pediatric heart interventions. Gain knowledge.
It matters. It matters so much to our family, but it also matters to 1% of other families, 40,000 families per year in the United States, facing a life they never imagined.