Congenital heart defects are the leading cause of infant mortality in the United States. CHD affects 1% of all newborns in the U.S. and are responsible for more deaths in the first year of life than any other birth defect.
Truncus arteriosus is rare among these—according to CDC statistics, 0.72 live births in 10,000 have TA. That’s around 250 children each year. Consider that Prentice Women’s Hospital, the hospital where Charlotte was born, delivers more than 10,000 children each year. and you can begin to get a sense of few children are born with this defect.
A 2014 NIH study demonstrated that trunks arteriosus is one of the most expensive hospitalizations of any defect. Depending on length of hospital stay and complexity of post-operative complications, a TA repair can cost as much as $425,000 (high end is a greater than seven day stay). Average hospital stay is around 21 days. Charlotte’s first hospital stay was 49 days; she was above average even then! Charlotte’s most angioplasty (2012) that required only one overnight stay, came in at more than $66,000, so I’m guessing that her neonate was much higher than average.
90 percent of newborns survive their first repair. The degree of complications after that surgery is hard to track, I think. It depends on how much damage the heart suffered prior to repair (for Charlotte, minimal, thank goodness), what other underlying medical issues are there, and (I think) each child’s individual constitution.
Those are the CDC stats, the numbers that parents seek out when they first hear those life-changing word, “The ultrasound shows…” After that other numbers take over, ventricular performance, pulse ox, weight, medicine dosages, food intake, months to next surgery, etc.
Parents seek out other parents, and in 2005 that was hard to do. While I try to avoid medical advice and information on the internet, I relied on it for reflux support for years and I am proud that this blog has given it to other parents facing Truncus Arteriosus and other CHDs.
I rarely blog any more since Charlotte’s Journey Home was meant to share her ups and downs with the “Charlotte Watchers.” We are the lucky ones; Charlotte’s heart is the thing. Her feeding disorder is far enough in the rearview mirror that she no longer remembers it. She has minimal neurodevelopmental complications. In fact, the neurocardiologist who once marveled that she was bilingual at 9 years old would probably faint to hear that she speaks three languages now, and I mean really speaks them, and maintains a straight A average in honors classes at her high school (humble mom brag).
This week, I blog for awareness and celebration. I celebrate other CHD Parents like France Paul and Tommy Riles who have taken inspiration from their children’s medical difficulties to raise awareness and money for children born with congenital heart defects. I celebrate my cousin Lynne whose CHD is the last thing that defines her–she’s defined by the life-changing school for autistic kids that she and her family founded in Richmond, Virginia (Yeah, she’s my major hero.) I celebrate Ann and Robert H. Lurie Children’s Hospital of Chicago makes a difference every day for parents and kids facing CHD, both the facility and the US News & World Report-rated Cardiology team. And I celebrate Charlotte who reminded me that she is 15 3/4 today. She truly is a rare bird.