July 5th, 2016 might have been the best day of Connor Church’s life.
60 mile per hour winds were whipping past his Minnesota Twins cap and rain lashed against the concrete, rebounding up to splash his newly-lowered kneecaps before descending again. Lightning illuminated the field in sprinkled milliseconds, flashing brighter even than the buzzing floodlights. And still, Connor couldn’t stop smiling. After all—rain delay or not—he was at his very first Twins game.
Though Atlantic, Iowa is home for Connor, his long history at Gillette Children’s Specialty Healthcare has molded him into a lifelong Twins fan. This particular time, he was at Gillette so Tom Novacheck, MD, could take the plates out of his kneecaps. Three months earlier, Novacheck had lowered the kneecaps a few inches to correct some gait issues. If Connor had to undergo another surgery during this visit, he was at least going to go to a Twins baseball game.
The game was supposed to start at 7 p.m., but it started raining a little bit. Then a little bit more, and a bit more after that. Soon, it was coming down in sheets, and Target Field staff herded everyone into the covered concourse through the wind and rain and lightning.
A Rocky Start
When Connor was born, he spent his first four months in the neonatal intensive care unit. At 13 weeks premature, he was a palm-sized bundle of complex care.
During those months he had infections, hernias, surgeries—complication after complication. When he finally went home, it took a veritable army to haul his medical equipment. He was on oxygen, seven different medications, two different breathing treatments and apnea monitors. He had a feeding tube, and he had very tired parents.
Debra Church, Connor’s mom, says, “Originally, we didn’t think we had anything to worry about function-wise because he had ultrasounds and MRIs when he was born. He didn’t have anything wrong with him at that time.”
After he was home for a few weeks, Connor was cranky and not acting like himself, so doctors did another MRI and found a troublesome reason why—periventricular leukomalacia (PVL). PVL is a white-matter brain injury that can affect premature infants. Since white matter transmits information between nerve cells, the spinal cord, and from one part of the brain to another, common symptoms of this damage include motor control problems or other developmental delays, and oftentimes, cerebral palsy or epilepsy.
Though the Church family knew of the PVL, it wasn’t until Connor was 2 that a doctor in Nebraska gave the cerebral palsy (CP) diagnosis. At that point, Debra says, “They could tell it was going to be a little serious. He had some motor delays. Though he walked at 17 months old, he couldn’t sit up by himself very well.”
The Journey to Gillette
It was a stroke of luck that they heard about Gillette. A friend of Debra’s showed her a story in the Omaha World Herald about a boy who had CP. The boy’s mom had written letters to all the major hospitals in the United States, asking them to help her son. Gillette was the only hospital that wrote back. That child is now fully grown, independently walking, and attending medical school, but the fact that Gillette took the time to answer a mother’s letter gave Debra all the information she needed.
Connor’s first appointment at Gillette took place when he was 3 years old. He did gait testing at the James R. Gage Center for Gait and Motion Analysis. The Church family, James Gage, MD, and three other providers from orthopedics and neurology talked about selective dorsal rhizotomy (SDR) procedure.
“Dr. Gage was phenomenal. He was honest and gentle when he talked to us.” Debra said. She still tears up when she remembers that first appointment. “He said, ‘If Connor was my grandson, this is what I would do,’” Debra remembers. “No doctor had ever told us that before. No doctor had ever been so forthright about what we should do as parents.”
The decision to do the rhizotomy was easy, yet hard, Debra said. “You don’t want to do that to your kid, but you want the best for them.”
They chose to go ahead with the rhizotomy, scheduling the surgery for the following July.
Surgeries and Sports
It was the first of many surgery days. Connor had his rhizotomy when he was 4, and since then, he’s had a surgery every summer except for two.
Debra recounts the procedures: “He’s had lots of trouble with his left foot and left lower leg, on his right hip a couple derotations. There were derotations of his left foot, some knee surgeries, three or four surgeries on his right foot. At one point, he had casts on both feet and a bar in between. The last surgery they did his kneecaps and foot, then they derotated his right hip again. There must have been at least 30 procedures, and I know I’m not remembering all of them.”
The summers of surgery haven’t cramped Connor’s style too much, though. Debra says, “Connor is very outgoing and enthusiastic. He doesn’t let CP slow him down. He’s got friends everywhere; they know him by name here in town. People come up to me saying, ‘OMG, you’re Connor Church’s mom.’ We’ve been lucky with the kids and teachers that he’s had. They love him and support him and fight for him.”
Connor has learned to be forthright with people. “I was born early. I have a cyst on my brain. This is what happened because of that,” he explains. Whatever their response, he takes it in stride, generally asking about the person’s favorite sports team.
Connor, of course, roots for the Twins, but wants to go to Iowa State for college and go into sports broadcasting. He’s already the manager of his high school football, basketball, and tennis teams. It’s a full plate for his sophomore year, but Debra says he’ll do great.
Gait Lab Graduate
At Connor’s most recent follow-up in July, Novacheck did another gait and motion analysis evaluation. To Debra’s surprise, when Novacheck saw the results, he laughed. “I think Dr. Novacheck said, ‘Connor, I can’t really believe I’m going to tell you this, but because your legs are done growing, there are no more surgeries to do,’” Debra says.
Connor will still have hardware in his right hip, but he can’t feel it and since the plates and screws aren’t causing problems, in his hip they’ll stay. Novacheck also declared Connor a better walker without leg braces, so the era of foot orthoses and bracing is over, too.
Barring any unforeseen circumstances, he’s a Gait Lab Graduate.
No more braces. No more surgeries. The statements seems surreal to the Church family. The relief and happiness is something they never could have imagined 13 years ago.
“I don’t care how many trips to Minnesota we had to make, we feel lucky just to have gone to Gillette for his care,” says Debra, “At every other doctor, there was always the doubt—is this really the best option? I never felt that way at Gillette.”
Debra tears up again before continuing, “If you’re at Gillette, you’ve come to the most absolute right place. It’s just amazing what they have done. I can’t imagine Connor’s life had we not gone there. I don’t think he’d be as independent as he is right now. Just know in your heart, as a parent, that you’re doing the right thing by being at Gillette. Youwant what is best for your kids. Gillette is the place to be to get the best.”
Rooting for the Home Team
After the storm calmed down, the first pitch was thrown at 9:50 p.m. During the 2nd inning, a gentleman wearing a suit and tie came up to Connor and his family. He thanked Connor for staying despite the monsoon and invited the Church family to sit behind home plate for the rest of the game. Afterwards, they got to go into the clubhouse for hot dogs, snacks, and ice cream.
Debra says, “Connor left the game smiling from ear to ear, and immediately sent the man a thank you note once we got home.” Connor told him how much he enjoyed his first major league experience and sent along a photo of the night.
A few weeks later, Connor got a package from the Twins. There was a backpack, a jersey, a sweatshirt and hat, a signed baseball and a note. “Hi Connor, thanks for letting me know you had an awesome time during the monsoon game. I wanted to send a tribute from the Twins so you can show your team support at home.”
“Which was weird,” Connor says, “because Minnesota is kind of like home, too.”