Doc Shaw and his wife drove over 2,000 miles in a small RV from Seaside to Indianapolis with their infant son.
Their destination? Peyton Manning Children’s Hospital.
Their son, Kashton, underwent surgery last week for a neurologic condition called tethered spinal cord, in which the spinal cord is unable to move within the spinal column. The couple decided to travel across the country after the doctor they were seeing in Portland moved to a hospital in Indianapolis.
“It’s been devastating for us,” Shaw said. “We’re just trying to keep him alive.”
Kashton was born in May after an intense and terrifying delivery, according to his mom, Samantha Childress.
“After we spent time bonding, the nurses did their exam,” she said. “Doc and I noticed them spending a little extra attention to an area on his lower back-upper butt crack.”
A few days later, their pediatrician explained he had a sacral dimple. While many are nothing to worry about, Kashton’s was not only deep but had some other markers warranting more attention.
“She told us she wanted to be ‘overly cautious’ and get an ultrasound to make sure we were in the clear,” Childress said.
Then came the couple’s worst day.
“I noticed Kashton acting strangely, lethargic in a way, and then (he) projectile vomited,” Childress said. “A little time passed when I noticed the quietness. None of his normal grunty breathing. None of his random startled twitching. I unwrapped him to find him pale, limp and unresponsive.
“I screamed for Doc, had someone call 911, and worked endlessly to bring him back. Thanks to Doc’s quick reaction, we arrived at the local hospital four minutes before the ambulance even got to the shop and by some miracle Kashton started breathing as soon as we arrived.”
Kashton was transferred from Providence Seaside Hospital to Providence St. Vincent’s in Portland, where he was monitored and some tests were done.
They were told by hospital staff that what happened to their son was unexplainable and he was fine, Childress said.
Terrified of a recurrence, they realized they were going to have to advocate and fight for answers.
They invested heavily to keep Kashton monitored at all times and alert them if he stopped breathing or his heart rate was abnormal, Childress said.
“Doc and I have spent every day together since the first day he stopped breathing fearing that it may happen again — and it did, an overall of five times in three months,” she said.
They searched for answers, doing research, joining groups, reading forums and seeking second and third opinions.
An ultrasound showed abnormalities to Kashton’s spinal cord.
“This meant we had to put our not even 8-week-old under anesthesia for an MRI,” Childress said. “Handing our baby over to that doctor was one of the hardest things we’ve done and the MRI was the longest 45 minutes we have experienced.”
At Randall Children’s Hospital at Legacy Emanuel Medical Center in Portland, they found Dr. Monica Wehby, someone “who not only saw what they saw, but knew how to fix it,” Childress said.
This month, Wehby recommended surgery — but she was moving to Indianapolis to be closer to family.
Shaw and Childress followed their doctor’s trail.
Kashton’s worsening symptoms, including severe constipation, hyperreflexia, hip spasticity and bladder retention issues, made the surgery even more urgent.
During surgery, doctors make a small incision in the back and another small incision to the muscle, Shaw said. They make another incision through the spinal canal to clip the tethered cord and relieve the pressure on the back, and hopefully stop any long-term effects.
The recuperation time is up to Kashton and how he tolerates pain, anesthesia and medications, Childress said.
“It has been a struggle to travel, even being in a motor home,” she said.
Kashton was in the car seat about eight to 10 hours a day. “We have had to stop because of meltdowns because we don’t want him to be suffering.”
Despite his symptoms, Kashton is “always happy, always smiling,” Shaw said. “Out of nowhere people stop and say our baby looks like an angel from heaven. When he comes to the shop he is just the happiest little guy.”
During all this, Childress and Shaw struggled to maintain operations at Doc’s Auto Repair, their business in Seaside.
“It was just super hard on us because we want to be there for our community, but we haven’t been,” Shaw said.
When one of their top auto techs was out sick, “it was a snowball effect for our customers,” Shaw said. “We love our business and we’ve tried really hard to make it great for the community. And since we’ve been gone it’s been difficult. When they come to Doc’s Auto Repair everybody’s looking for Doc.
“We’ve just been kind of out of the loop for things for several months because it was a day-and-night effort by both of us.”
A GoFundMe page, “Cure for Kashton,” invites people to help the family with medical costs.
Their first estimate for the surgery was $80,000, Shaw said. That was later revised upward to $134,000. Added to that are travel costs from driving across the country.
“It’s been devastating on us,” Shaw said. “It’s been devastating financially. We don’t know how we’re going to get through this, but we will manage. We’ll do whatever we’ve got to do. We’ll sell everything we have.
“I didn’t expect anybody would even come to our side, to be honest with you. The community has really been stepping up. It’s taken me to my knees more than once on this trip how many people have just reached out. I just have to say ‘thanks.’ It’s been amazing.”
The days since surgery have been a huge roller coaster, Childress said, but overall, “Kashton is doing amazing.” The family will spend a few more days in Indianapolis to make sure he’s ready for the trek home, she added.