A Magazine from Akron Children's
Every family is unique, and so are their healthcare experiences. In “The parent’s perspective,” you’ll learn about amazing patients from the people who know them best.
The Tschantz family — Aaron (father), baby Rory, Sarah (mom) and big brother Leo — as they leave the NICU after a 143-day stay.
Even after a complicated first pregnancy, I could not have predicted how my second pregnancy would go. At just 29 weeks, I developed both preeclampsia and HELLP syndrome, severe health complications that affect blood flow to the placenta.
The best course of action was to deliver our baby boy. On Jan. 5, 2026, Rory Kai Tschantz entered this world weighing 2 pounds, 14 ounces and measuring 14.5 inches long.
Being that tiny, he was immediately taken to Akron Children’s Neonatal Intensive Care Unit (NICU). Because of how sensitive babies in the NICU are and the fact that we were right in the middle of flu season, our 6-year-old son, Leo, could not meet his baby brother. My husband, Aaron, and I quickly learned what it meant to split our time between the NICU, being home with our school-aged son, while also ensuring that I could heal from an emergency cesarean section.
But if I thought that my second pregnancy was unpredictable, our time in the NICU was even more so. Our sweet Rory developed necrotizing enterocolitis (NEC), a life-threatening intestinal disease that typically affects early-term babies, and a bowel perforation. He had to have emergency surgery, during which his diagnosis progressed to NEC Totalis, which is a severe form of NEC and is usually fatal.
That night, we anticipated this would be the first and last time our family could meet Rory, so the NICU permitted a visit. We tried to find a way to delicately explain to a 6-year-old what was going on. Leo was in awe when he saw Rory and could not believe he was finally meeting his baby brother. Leo even said, “Mommy, he’s so cute! Can we keep him?”
But despite Rory’s drastic diagnosis, losing 60 centimeters of small intestine and part of his colon, he defied all odds and pulled through. He was then diagnosed with Short Bowel Syndrome, and today, he is Total Parenteral Nutrition (TPN) and G-tube dependent. We are working on building up a feeding tolerance to hopefully come off TPN in the future.
After Rory overcame NEC, he still needed a lot of care in the NICU, so we were still splitting our time between the hospital and home. When we were apart from Leo, we would often FaceTime him and show him pictures of his baby brother. The nurses would even write him notes “from” Rory.
Then, after more than 143 days in the NICU, we got to take our sweet baby boy home. And if there is anything we learned throughout that time, it’s that sometimes things happen that are beyond us. If your family experienced pregnancy complications or even preterm birth, it is not your fault. Never be afraid to ask for help, be involved in your baby’s care and be the voice for your child. Lean on your care team as much as you can. The staff at Akron Children’s NICU supported our decisions, even when they were incredibly hard. They made sure we were educated, supported and encouraged.
Now, we have been home for a few months. While it was a big transition for us, we have fallen into a routine that suits Rory’s needs while also ensuring Leo isn’t left behind. We’ve learned to slow down and cherish every second we have with our family. This summer, we got to bring Rory to his big brother’s baseball games and taekwondo practices. We’re so grateful to be leaning into these little slices of normalcy after so much unpredictability.
Born at just 29 weeks with an intestinal condition and bowel perforation, Rory is a little fighter who overcame every challenge.
From inspiring stories, to medical miracles, the More childhood, please.® magazine will make you appreciate those precious 6,574 days of childhood.
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