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Parker's Story

Our daughter, Parker, and her twin brother, Rhodes, arrived in the NICU four months early on July 7, 2020.  Sitting in the hospital on week three of five, 23 weeks pregnant with a weak cervix, my husband and I had already started to navigate some initial obstacles. However, we weren’t prepared to hear our neonatologist provide a laundry list of every possible lethal and/or chronic complication that comes with extreme premature birth. My husband and I thought, “This won’t happen to our kids, our family will be the exception."


With the surge of fear came the immediate urge to spring into action, doing my own research to find answers. Within the three page list that I scribbled down in my notebook, lay “gastrointestinal disease-Necrotizing Enterocolitis: mortality rate 50%.” It was after brain, heart and lung complications and before cerebral palsy, learning disability, vision and hearing impairments. Just casually written down, smack dab in the middle of that seemingly endless list. Little did we know that those exact, smack dab in the middle words, were the words that we would say on repeat, and hear on repeat, more than one hundred times (at least) during Parker’s almost four month stay in the NICU.

 
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Parker would go on to be diagnosed with NEC twice within her time in the NICU. The first time was when she was approximately four weeks old. She fought hard and improved in the weeks to come. She was thought to have made a complete recovery from her initial diagnosis, but weeks later she would be diagnosed with NEC for a second time. This is rare, but not impossible. Cue extreme frustration, sadness, confusion, and every other emotion in the book.  She was not a textbook case; she had every neonatologist and pediatric surgeon scratching their heads. She had a few “NEC-like symptoms,” but was otherwise hemodynamically stable. Her x-rays and ultrasounds of her abdomen did not show significant signs of NEC. After weeks of conversations with every surgeon and most of the neonatologists on staff, Parker passed away, one week after Rhodes graduated from the NICU in late October.

There is currently no diagnostic test for this devastating disease. Two weeks later, I stumbled upon the work of Dr. Sunyoung Kim and the brilliant minds of her diagnostic team, Chosen Diagnostics. She and her team worked diligently to create a noninvasive diagnostic test and continue to conduct very successful clinical trials that can not only detect NEC days before symptoms arise, but can detect the severity of the course the disease will take. This is the important work that we want to bring to light by sharing Parker’s story.