Neighbor boy offers hope for Carbondale family
For all the medical and insurance problems plaguing 13-month-old Saige Blotske, the victim of a rare genetic disorder, she has a good chance of leading a normal life if she makes it through early childhood.
Her parents, Trevor and April Blotske, hope their baby girl’s future can foreseen by looking no farther than a few blocks away from their Carbondale home, to the home of John and Julie Hawkins and their 4-year-old son Tanner.
Tanner and Saige, both Carbondale natives, were born with Apert syndrome, a genetic birth defect that dramatically distorts development of the skull, face, hands and feet. Named for the French physician who diagnosed it in the early 1900s, it is extremely rare, afflicting approximately one in 160,000 newborns each year, according to studies cited by the National Institute of Health.
Like Tanner, Saige was fitted with a tracheal tube when she was about six weeks old, just so she could keep breathing. Like Tanner, her fingers and her toes were fused together at birth and can only be separated with two or three surgeries. And like Tanner, Saige has had cranial surgery to separate prematurely fused skull plates. She faces several more years of surgery as doctors repair the damage Apert syndrome has wrought.
But as bleak as things may appear for Saige in the short term, her parents hope she will keep on being like Tanner, and grow out of the need for constant nursing care and into a mobile, inquisitive child who is able to join other kids in school and play.
These days, Tanner can hold his own when playing video games with his older brothers, Travis, 9, and Jake, 7 (neither of whom have Apert syndrome). He can manipulate his parents as well as any 4-year-old in the valley. He can even rattle off all 26 letters in the alphabet – in order – just like any kid readying for his first year in school.
Ask Tanner what his favorite thing to do is, and he’ll give you a typical 4-year-old’s answer: “Nothing.” What’s his favorite thing about school? “Nothing.” Who’s his best friend? “Nobody.” What’s his favorite video game? “Nothing,” he says, even as he eyes the empty seat and unused joy stick next to his brother, who is perched in front of the television maneuvering a video race car through the course on the screen. Fitting in Tanner currently attends pre-school in Basalt. His parents say he gets some grief because he looks different, but he has nonetheless learned to fit in and most of his classmates have come to accept him.
“There are issues, times where kids make fun of him and give him a hard time. Actually, adults make some of the dumber comments around Tanner,” said Julie Hawkins. “He’s got a lot of little friends now, so he just needs to learn to let go of the two in a hundred who give him a hard time.”
Julie, who teaches art at Basalt Elementary School, said it took her about two and a half years to realize that life – hers, Tanner’s, the family’s – can go on normally, even with Apert syndrome.
“It can pull you together if you let it,” said John, a supervisor for Rudd Construction. “We’ve learned so much about life from Tanner.”
But unlike Tanner and his parents, Saige and her parents have found themselves relying on donations and grants to keep the family intact. The Blotskes became the beneficiaries of much of the community’s holiday giving this year after newspaper stories in The Aspen Times and The Denver Post publicized their health-care nightmare.
Home Health of the Rockies, the firm that pays the nurses who care for Saige seven nights and three days a week, dropped the Blotskes from its rolls on Christmas Day. Even though April and Trevor have spent several weeks without luck in looking for a new provider, donations from the public and a grant by a Denver-based nonprofit mean Saige can remain home at least until the end of February.
“I can’t say enough about the importance of the home nursing,” said Julie. “It allowed us to carry on as best we could – raising our other two boys and going to work. It was necessary just so we could go to the store.”
When Tanner was born at Valley View Hospital in 1995, the doctors there had little knowledge about Apert syndrome. He was airlifted to Children’s Hospital in Denver, where he spent much of his early infancy in the intensive-care ward.
The importance of bringing Tanner home as quickly as possible became more urgent after John and Julie got to know another little boy, with a different birth defect, who was all alone and living in the intensive-care unit.
“They left him in a bed all day, every day. We tried to check in and spend time with him as much as we could. It’s a sterile, empty place to try and raise a baby – nobody talking to him, nobody playing with him,” John recalled. Nursing help critical One of the Hawkins’ first big medical decisions was whether Tanner should be fitted with a tracheal tube. “The idea of bringing a baby home with a trach tube was so … it was a horrible thought,” said Julie. It was an idea that she and John quickly accepted after watching their son struggle to catch every breath.
Once the tube was in, however, Tanner demanded even more nursing attention. Infants with tracheal tubes require additional oxygen from a tank every few hours, and all of the equipment must be kept extremely clean, John said. Also, trach tubes often fall out.
“If his trach came out when he was a baby, he wouldn’t have lasted three minutes. That’s why nursing is so important,” said Julie.
Like the Blotskes, the Hawkins also struggled with home nursing at first. Although there were plenty of qualified nurses in the valley, there wasn’t a home health provider on the Western Slope willing to bill their insurance company and pay those nurses. According to John, Tanner was one of Home Health of the Rockies’ very first patients.
“[Home Health owner] Ted McWhorter started his company here with us,” John said.
Much like the Blotskes’ situation now, once insurance support began to waiver, Tanner was dropped by Home Health of the Rockies. Although by the time the break occurred, said John, Tanner was much better and the family was ready to go without constant supervision.
There were also issues with finding the right mix of doctors for their son. “For a year and a half, we struggled getting the doctors together,” he said. And, more than once, they ignored the advice of Tanner’s physicians.
For instance, Tanner’s doctors in Denver advised against the craniofacial surgery between his first and second birthday, because they thought it wasn’t necessary, yet. But the Hawkins disagreed, and they took their son to a hospital in Dallas that cares for a large number of Apert babies, even though leaving the state meant the risk of forgoing insurance and Medicaid coverage. The doctors there performed the operation, and found a potentially fatal bone spur growing into Tanner’s brain.
“You become a nurse, you become a doctor, you become an advocate, because nobody else is going to do it,” John said.
These days, however, John and Julie are spending a lot less time as nurse, doctor and advocate and a lot more as parents. “This was a wonderful summer – we got to go camping and he went swimming,” said Julie.
Added John: “There’s a time when you need to stop pampering and get on his butt.”
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Anderson Ranch Arts Center never stopped offering its children’s programs, even during the pandemic summer of 2020 when so much else had to be put on the back burner or shelved amid restrictions. Programs sold out then, and it has been a similar story in 2021.