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Waiting For Cleft Palate Surgery Amidst The Pandemic

Courtesy of Jackie Worthen

As concerns about shortages of personal protective equipment and hospital overcrowding during the coronavirus pandemic grew, Utah’s governor issued an executive order last month stopping all elective surgeries in the state. For one Cedar City family, this means their five-month-old baby is awaiting a postponed cleft lip and palate surgery.

“It really just all depends on when the Timpanogos Hospital is going to reopen their elective surgeries. Which I think is funny because I don't think of cleft palate surgery as being like an elective. Breast augmentation or liposuction, like those are things that probably don't need to be done right now, but you know, a child needs to eat and when they have weight issues and things like that, this surgery is kind of the saving grace for so many families,” said Jackie Worthen.

Worthen’s son, Jaxton, was all ready to have the first surgery needed to begin the repair of his cleft lip and palate in March. Then, a state executive order stopping elective surgeries led to his procedure being rescheduled and eventually cancelled until further notice. 

Worthen said on May 1, surgeries at the hospital could start to be rescheduled again. However, that doesn't mean Jaxton will be ready. 

“We still have to go and check with our surgeon,” Worthen said. “We still have to check with our orthodontist. We still have to check with a feeding specialist. We still have to check with a swallowing specialist. All these different people who have to say, Okay, now you're ready to have surgery.”

Worthen said if the window for this first surgery is missed, Jaxton may have to wait until he is 18 months old, which is when a second cleft palate surgery would usually take place. Although the procedure can be done later in life, having it done sooner can prevent some challenges, like issues with speech and aspirating. 

But despite the uncertainty Worthen said her family is facing, had Jaxton been born a few months later, things could be even more stressful. Before everything began shutting down, the Worthens were able to have Jaxton fitted with a device that pulls the two sides of his jaw back together and prepares his mouth for surgery. She said babies who have been born with a cleft palate since the shutdown have not been able to get this device. 

“I just know that there are so many moms out there who are having their babies, and their babies are being born not just in a quarantine time," Worthen said, "but their babies are being born with a cleft and each one of those things is overwhelming as it is. I feel for those mamas.”

But despite the stress Worthen said she is feeling, she said Jaxton is doing pretty great. Afterall, this is all he has even known. 

Worthen has created an Instagram account to pair new parents of babies with cleft lip and palate with families who have experienced the same things. The handle is celftmomma2019.