Bayfield resident Kristen Westbrook was a month from her due date when she experienced complications – excessive amniotic fluid that can lead to preterm labor. Doctors ran tests, and, in the process, discovered her baby would be born with Down syndrome.
“It was shocking,” Westbrook said. “Obviously, that’s not something anyone ever expects. ... Down syndrome was such an unknown to me.”
Since Madalyn was born in April 2009, Westbrook has learned a lot. She and her husband, Mark, have adopted four more girls – two from Ukraine and two from China – who have Down syndrome. The couple now have 10 children, four biological and six adopted.
Having five girls with Down syndrome presents unique challenges, including medical issues that require special care from experts at Children’s Hospital Colorado in Aurora. Making the 350-mile trip for routine visits isn’t easy for a family this size.
Fortunately, they can participate in telemedicine – a video linkup that allows doctors to perform routine checkups on patients from virtually anywhere in the world. With the help of a nurse in Durango, they use digital otoscopes and stethoscopes to examine ears, eyes, throats and heartbeats.
Last month, all five girls played in a room at Pediatric Partners of the Southwest in Durango while Dr. Francis Hickey and Kathleen Mays observed from Aurora.
The girls took turns jumping off a tumble mat and playing games while Dr. Mays talked with Kristen Westbrook about their progress.
“They can pretty much do a full exam on the patient with my help,” said Amanda Harrison, nurse manager and telemedicine coordinator at Pediatric Partners. “We have all the tools.”
Children’s Hospital offers the service to anyone in Southwest Colorado; Pediatric Partners hosts the service in this corner of the state, but Children’s Hospital patients don’t have to be clients of Pediatric Partners to schedule a visit.
The technology, which costs about $8,000, consists of a flat-screen TV, camera, digital medical devices and a blazing-fast internet connection. The video and sound are nearly flawless, with no delay, allowing for seamless conversation.
Children’s Hospital saved 122 patients from having to make 160 visits to Denver from Southwest Colorado last year thanks to telemedicine, said Dr. John F. “Fred” Thomas, an epidemiologist at the University of Colorado and director of Telemedicine for the hospital. That represents about nine months in travel time and $100,000 in travel expenses, he said.
For the most part, patients and doctors have come around to the new technology, he said.
“We don’t do anything that doesn’t either meet best-practice or improve best-practice,” Thomas said.
The service has allowed the Westbrooks to consult with doctors and therapists more frequently about their daughters’ speech patterns, physical development and cognitive abilities.
“Those services are just awesome and so valuable,” Kristen Westbrook said. “Going to Denver – it’s very complicated. Plus, our kids are in sports, and there’s just a lot of family life.”
Madalyn, now 7, was born with intestinal blockage, and, at 7 months, needed open-heart surgery.
About that time, Westbrook began researching what happens to children born with Down syndrome in other countries. She was horrified to learn they are often discarded or given to orphanages, where they may be neglected.
“That was heartbreaking for us,” Kristen Westbrook said.
The Westbrooks decided to adopt two more girls with Down syndrome in 2010 from Ukraine – one of the places they read about where children with disabilities don’t receive proper care. They had two motivations: to save the girls’ lives and to give Madalyn sisters with similar needs.
After adopting Anna, 7, and Victoria, 8, who were born within two months of Madalyn, the Westbrooks adopted two more girls – Emilee, 10, and Ruby, 9 – from China in 2012.
“It just happened,” Kristen Westbrook said with a chuckle. “They all have Down syndrome, but they all have very different personalities. ... They all get along; I rarely have to referee a fight.”
They enjoy music, Disney movies, iPads and each other’s company. Their older brothers also join in on games.
The idea of adoption wasn’t foreign to Kristen Westbrook, who grew up with two sisters adopted from Taiwan, including one who is deaf. She and her husband also adopted a foster child and another child. All together, they have five boys and five girls between the ages of 7 and 28. The two oldest boys, Roy Westbrook and Jordan Larson, are out of the house. Roy works at Alpine Lumber in Durango and Jordan works as a math teacher and head wrestling coach at Ignacio High School. Sam and Daniel Westbrook attend Bayfield High School. Justin, 9, is home-schooled.
They rely on health insurance and a medical waiver for Madalyn to help cover expenses. The five girls with Down syndrome attend public schools in Bayfield and receive services through San Juan Board of Cooperative Educational Services, which provides speech therapy and special education.
Kristen Westbrook, a lifelong resident of the Ignacio-Bayfield area, said the community is accepting of her family. She is a stay-at-home mom, while Mark was an engineering consultant in oil and gas but was laid off in December 2015 and now works in construction.
“People mostly just say, ‘Oh my gosh, I can’t believe you can do that, you’re amazing.’ And I try to say, ‘No, I’m not amazing. I’m just a parent, and this is my family.’ ... I know that I have a lot, I know that I have a full plate and I’m very busy, but I’m not amazing.
“I’m just a mom trying to do the best I can, like everybody else.”