October is Pregnancy & Infant Loss Awareness month. Unfortunately, many of our heart families walk this impossible road. Help-A-Heart wanted to share the story of one of our heart angel families this month to help raise awareness. Thank you to Nate & Emily Forsythe for writing & sharing the story of their precious daughter, Kennedy Ren Forsythe. Nate & Emily are the proud parents of Kennedy & Oliver (age 1). This is Part 2 of 11.
Diagnosis
K was diagnosed with Transposition of the Great Arteries (TGA). TGA is when the aorta and pulmonary artery are attached to the wrong side of the heart, creating two closed circuits. Oxygen-poor blood circulates through the body bypassing the lungs and oxygen-rich blood circulates from the heart to the lungs and back. In simple terms, a healthy heart pumps blood from the heart to the lungs to the body and back to the heart. A TGA heart has two cycles: heart – lungs – heart; and heart– body–heart. Oxygenated blood does not mix with the body. Survival requires open heart surgery to switch the arteries and move them to the correct place in the heart.
The diagnosis was confirmed by the local high risk clinic, again by the University of Iowa high risk group, and finally by Dr. R, the pediatric cardiologist at the University of Iowa.
So she had the arterial switch.
Fast forward.
We received her autopsy results during the summer of 2016. Fourteen pages of medical terms that I can’t comprehend. Fourteen pages. During our tenure in the Pediatric Cardiac Intensive Care Unit I became an expert on her condition, memorizing the terms the medical team used and researching them so I could follow along during their daily rounds. But none of the words made sense. So I called. I had to wait a week for someone to call me back, but it was Dr. L – I liked him. He had a copy of her autopsy report, her caths, her x-rays – all of her available data – in front of him. He dives in and we go page by page, giving me the overview of what it means.
*A note of love – the report lists her as patient. Dr. L calls her by her name on every line. What a wonderful thing to hear her name.*
We get to the end of the report. He give me an analogy that I really don’t understand – something about trucks and a tunnel…. He paused and I take a deep breath. I think I know where this conversation is going, but I’m just hoping that he doesn’t say it. “We can’t confirm that Kennedy had Transposition of the Great Arteries.” He said they had cardiologists from across the country looking at her data. Half of them think she had severe TGA. The other half think it was something different (her heart was backwards, or her ventricles were switched instead, or……….) I don’t hear much at this point. What it comes down to is that no one knows what her heart defect was. Only that it was broken.
And that’s been a really hard pill to swallow.
