The birth of a newborn is supposed to be one of the most joyful moments in a parent’s life, a time when families gather and anticipate welcoming their newest family member into the world.
In January 2016, Scott and Kara Hochreiter were anxiously awaiting the birth of their second child. Their first child, Lauren, was ready to be a big sister. And the Hochreiters had little to fear, as they’d gone through a normal pregnancy and were ready to rejoice the birth of their baby boy, Owen.
But on the morning of Owen’s birth, doctors at UR Medicine’s Strong Memorial Hospital performed a routine ultrasound that revealed fluid on Owen’s brain. He would need to be immediately rushed to the neonatal intensive care unit (NICU) at Golisano Children’s Hospital after his birth.
After spending the night in the NICU, the Hochreiters were informed that Owen had a rare condition known as Vein of Galen Malformation, a blood vessel abnormality in which arteries connect directly with veins and bypass capillaries. Approximately one in every 3 million babies is born with Vein of Galen Malformation. Owen essentially had an artery running directly from his heart to his brain, causing his heart to be overwhelmed, and his other vital organs to be deprived of necessary blood flow.
Due to the rarity of Owen's condition, he and Scott were airlifted to Boston Children's Hospital, where they hoped to find treatment options. After consulting with doctors in Boston, they were given the heartbreaking news that Owen's condition was rapidly deteriorating and his condition had become untreatable. Scott and Kara made the decision to return Owen home to Golisano Children's Hospital to spend his remaining days with family and friends.
“Having a baby in the NICU that you know you will never be taking home is a frightening experience,” said Kara. “But every day we were greeted with love, encouragement, and true unconditional caring.”
Owen was baptized in the NICU at Golisano Children’s Hospital and soaked up as much love as he could from his parents and family while he was alive. He passed away on February 1, 2016.
“When you lose a child, especially an eight-day-old baby, as a parent, you feel an overwhelming need to remember and celebrate your child, and remind others that he existed,” said Kara.
Although Owen only survived eight days in the NICU, his legacy lives on, as the Hochreiters, along with their friends and family, have rallied around his story. Honoring Owen, a team dedicated to his memory, was one of the top fundraising teams at the 2016 Stroll for Strong Kids.
And they’re just getting started. On Meliora Weekend (October 6-9), the Barnes &Noble at the University of Rochester in CollegeTown will host a book buying event, appropriately titled “Honoring Owen.” At the event, Barnes & Noble customers will be able to purchase a book for the Honoring Owen Book Collection, which will be available to families at the Golisano Children’s Hospital Family Resource Library. This permanent collection will help families in the hospital in need of a good story. Each book will have an attached nameplate where donors can honor a loved one of their choice, as well.
The idea was hatched in Florida in April while the Hochreiters were visiting Kara’s parents for Lauren’s birthday. They stopped at Golisano Children’s Museum of Naples during their trip, where they found a vast children’s library. They recalled the library in Golisano Children’s Hospital back in Rochester and thought of a program that would get books in the hands of families in the hospital. They aimed to create a normal activity that parents can do with their kids who are in difficult situations.
“We started talking about how in Owen’s situation, one of the only normal things I ever got to do with Owen was read to him,” said Kara. “It was very calming. It felt normal. It felt very complete. I was doing something together with him during such chaos.”
The launch of the Honoring Owen Book Collection on Meliora Weekend will feature a special selection of children’s books being displayed throughout the store. If you’re unable to get to Barnes & Noble at the University of Rochester, you can send a Barnes & Noble gift card to Golisano Children’s Hospital’s Librarian, Jennifer Raynor, and she’ll select books for the Library.
To ship a gift card, address it to: Golisano Children’s Hospital, Family Resource Library, Attn: Jennifer Raynor, Box LIBR, 601 Elmwood Avenue, Rochester, NY 14642.
For more information on the Honoring Owen Book Collection, visit the GCH Family Resource Library website.