October 25 was World Spina Bifida and Hydrocephalus Day. Yesterday we shared the story of Chloe and Gracie, two longtime Gillette patients connected by spina bifida and their profound friendship. Today, we're sharing the story of Owen Nei, an exceptional young man and Gillette patient who was born with severe hydrocephalus and additional complications. Owen's had to work hard to get to where he is today, but he's done all of it like he does most things: incredibly well.
This story was originally posted in 2019 and the photos reflect that.
Read Owen's story below:
Owen Nei is 11 years old, an avid hockey and baseball player, and a young man who lights up every room he’s in with his positive, irrepressible attitude. Given how his life started out, the fact that he’s even here, much less doing all of these things, is nothing short of a miracle.
“We were in for our 19-week checkup,” says Owen’s father, Chris. “The ultrasound technician just got kind of quiet and said that we would have to come in the next day to see a doctor. That night felt like an eternity. When we did get in to see her, she told us that Owen had severe hydrocephalus.”
Owen had a condition called aqueductal stenosis, which means that the third and fourth ventricles of his brain did not develop properly, causing his brain to fill with spinal fluid to the point where it appeared he had virtually no brain tissue. There was no way for the spinal fluid to flow through to his spinal column so the fluid in his brain with nowhere to go.
His prognosis was bleak.
“We were advised several times that it was very likely that if carried to term, Owen would not survive. We were told that we had the option to terminate the pregnancy,” says Chris. “That was never an option for us.”
So for the rest of the pregnancy, Owen's family prayed with family and friends for a miracle, but they never lost hope.
“At one point during the pregnancy, I told my wife Kim, that ‘I just have this sense of peace that everything is going to be OK.’ We're a very spiritual family and we put our faith in God to get us through that time.” Chris recounts.
A Miracle Not Without Its Challenges
Miraculously, Owen was carried nearly to full term, but when he arrived it was clear that a long road lay ahead.
In addition to hydrocephalus, Owen was also diagnosed with Goldenhar syndrome, a rare congenital condition characterized by incomplete development of the ear, nose, lip and jaw. The Neis would spend more than 30 days in the neonatal intensive care unit with Owen going through multiple surgeries to keep him alive.
"When Owen was born, it was such a roller coaster of emotions. Once your child is born you love them immediately and unconditionally, but there was also the reality of all the potential challenges and issues he and we could be facing,” says Chris. “I remember having these fleeting, terrible thoughts. Like if he didn’t make it, maybe that would be OK. Then I would feel so guilty and think, ‘Oh my gosh, how could I even think like that!’ It was such an emotional, stressful time for us. You’ve got this little baby with this giant head, who’s missing part of his ear and clearly would require a great deal of care, and you wonder, can we handle this? But in the end, it’s your child and he’s a gift.”
The Neis were finally able to bring Owen home, but more care and therapy at Gillette would be required. In his 11 years on this Earth, Owen has had 15 surgeries. He has endured more than most individuals would in a lifetime, but through all of it, he’s done so with grace and positive disposition that affects everyone around him.
“It’s really incredible to look back and think about all of the little things that had to align to be where we are today,” says Chris. “For Owen to be cognitively on par with his peers and in the 6th grade, there aren’t really words to describe how happy that makes me. We owe a great deal to his team at Gillette and especially to Patrick Graupman, MD, our neurosurgeon who was instrumental in keeping Owen alive and getting him to where he is today.”
A Future Unbounded
Owen is doing nearly all of the things his parents initially thought he would never be able to do. Not only is he mainstreamed in all of his classes, but he also plays on his local hockey and baseball teams."All of our friends and family truly rallied around Owen after he was born, and it’s been the same way ever since,” says Chris. “Two years ago, Owen scored his first goal in hockey and you should’ve seen the way his teammates responded. They absolutely mobbed him and tackled him on the ice. He still has challenges and there may always be some limitations he’ll have to deal with, but he really doesn’t let anything (or anyone) stop him. He’s convinced he’s going to be a professional hockey player. The other day he asked me, ‘Dad, do you think I’ll have to play high school hockey, or can I just go straight to the pros?’ I told him that if there was anyone who could, it’s him.”
Owen and his father, Chris, in 2019
Owen and Chris were recently interviewed by the KS95 Morning Show to tell their story and promote the upcoming KS95 For Kids Radiothon. The Radiothon will take place December 11, 2020. All of the funds raised by the event benefit Gillette Children's and the Children's Cancer Research Fund.
The event will be held a bit differently this year, but the primary goal of helping children get the vital and necessary medical care they need hasn't changed. We hope that you'll participate the day of the event and if you are able, to give your support. You could give a wonderful gift to a family in need this holiday season. Owen and Chris at KS95, 2020