Patient Story 17 December 2020
One of a Kind Care
Written by Breann Lujan-Halcon
For this free range family, personalized healthcare is more important than ever, that is why they choose Ivinson.
During a global pandemic, many families find themselves delaying healthcare. For Colter Kirlin’s family, that is not an option.
Colter, the youngest member of the Kirlin/Chadwell family, was born with a rare syndrome called Beckwith-Wiedmann Syndrome (BWS), an overgrowth syndrome that affects about 1 in 11,000 infants. Due to his rare diagnosis, Colter’s specialty care team spans multiple facilities across the country – from Children’s Hospitals in Colorado and Philadelphia, all the way to Miami where he has seen multiple specialists for consults and surgeries. When they are home on their ranch outside of Laramie, Colter’s mom, Jennifer Chadwell, chooses Ivinson for their family’s primary healthcare needs.
“When my water broke at 34 weeks, I immediately went to Ivinson with my fiancé and my daughter who was 11 at the time. The nurses were incredible. When it was known I would have to be sent to Ft. Collins, my daughter broke down in tears and was scared for me. That ‘goodbye’ and ‘see you in a little bit’, was one of the hardest things I’ve had to do,” Jen recalled. “The nurse took her back to a magical room where she got to pick out a handmade blanket and stuffed animal. She still has them and she still talks about that experience to this day.”
Colter spent the first month of his life in a Colorado NICU before returning home on oxygen. At two months, Colter was diagnosed with laryngomalacia, a soft or floppy airway that causes noisy breathing. It was clear to Jen that Colter needed a provider that could keep up with his frequent hospital visits and growing list of specialists. That was when she sought out Dr. Daiva Olipra, a Pediatric and Family Care provider at Ivinson.
“We love Dr. Olipra to pieces. I could not ask for a better provider. She takes his care very seriously and checks in on him often,” said Jen, regarding transferring his primary care to Ivinson Medical Group. “She has never been uneasy about any aspect of his care. She will see him same day. I have never had any problems with getting him in emergently, which I am super thankful for.”
Jen and Colter have become well acquainted with Ivinson’s emergency room, due to the various respiratory issues that Colter frequently experiences.
“They definitely know Colter,” Jen said. “We are in the ER there at least once a month.”
Since COVID-19 precautions took place, Jen has found some questions harder to answer than in pre-COVID times. Health screening questions that look for symptoms of COVID-19 (trouble breathing, cough and shortness of breath) are more of a baseline for Colter than a new symptom.
“That’s just Colter,” Jen explains. “But then I say, ‘it’s Colter Kirlin’ and they’re like, oh, just bring him in! Ivinson has been a blessing because they know Colter here and they really are thorough with everything. To have that trust helps immensely.”
The familiarity has been blessing for Colter and his parents, who try to utilize local services at Ivinson as often as possible.
“If he ever needs blood work or testing in Denver, my first question is always, well can we do it at Ivinson? I also know that Dr. Olipra is going to see it and it’s going to be an extra set of eyes,” Jen said.
Due to his BWS diagnosis, Colter has an increased risk of abdominal cancers that warrant routine abdominal ultrasounds and tumor marker bloodwork every three months.
“Everybody remembers him,” Jen said of the outpatient radiology and laboratory team that check up on Colter quarterly. “When we come in they always remember that we have to do the ultrasound first, because if we do the blood work, then he’s going to be too worked up.”
Jean, a diagnostic medical sonographer at Ivinson, has played a consistent role in Colter’s care, and performs his quarterly ultrasound for him when he comes in for a visit.
“I do love that we always get Jean for the ultrasounds, she always remembers Colter,” Jen said. “While he’s getting his scan, it’s hard for a toddler to lay there for 20 minutes, but she plays with him and they sing and she makes it fun. It feels like a family when we are here.”
In between appointments, Colter and his family enjoy their ‘home on the range’ lifestyle where Colter has picked up on making realistic animal sounds from his friends that have fur and feathers.
“We still try to make things as normal as possible and I really feel like that has benefited him. He will come out with us and help in his own little ways to feed the animals,” Jen said of Colter’s love for his family’s barn cats and helping his dad with morning chores.
While BWS makes up a big part of Colter and his family’s lives, nothing has stopped them from living life to the fullest. Every day they take on new adventures and meet new milestones. Colter will be two in March. He loves cars, trains and singing, with ‘Old McDonald Had a Farm’ and ‘Twinkle Twinkle Little Star’ among some of his top hits.
“It is very helpful knowing that the hospital is not too far away if something happens,” Jen said. “When I call, I’m talking to a real person, they know my family, they know Colter, and that makes it better all the way around.”
Want to know how you can help pediatric patients at Ivinson? It’s as easy as spreading holiday cheer, visit our Foundation’s website to learn more.
Breann Lujan-Halcon is a writer and marketing professional for Ivinson. Breann began her career at Ivinson in 2015 as an office specialist at Ivinson Medical Group and worked full-time while earning her Bachelor of Arts degree in Journalism from the University of Wyoming. She graduated from UW in 2017 and made the jump to Ivinson's marketing team shortly after.