From “nubin” to outer ear; a little girl’s year of transformation

Born with mictrotia-atresia, seven-year-old Kambri Strawn endured six surgeries in 2016 to construct an outer ear. Stephanie Strawn, Kambri's mother, documented her daughter's journey on a blog, "Redefining Perfect."

Kambri Strawn is seven years old. Throughout her young life, this courageous little girl from Wellsville has endured countless appointments with doctors and specialized service providers in an effort to restore hearing in her right ear and construct an outer ear. She has also had multiple surgeries, the most recent being Dec. 28, 2016.

Born June 3, 2009 to Stephanie and Jared Strawn, Kambri was born with microtia-atresia, which is the underdevelopment of the external ear and the absence or closure of the external auditory ear canal. While Kambri’s left ear formed properly in utero, her right ear did not fully develop.  Shortly after Kambri’s birth, her family lovingly nicknamed the small formation of skin marking the incomplete formation of her right ear a “nubin.”

“Initially, we were shocked and surprised with her diagnosis, and there was a whole range of emotions that came with it,” said Kambri’s mother, Stephanie Strawn.  “We went from being excited and thinking, ‘this is gonna be ok,’ to where we would cry and say, ‘what are we gonna do?’ But eventually, we came to terms with it, and we’ve grown to love who she is with a nubin.”

Unfortunately, Kambri’s infancy was characterized by pain. Constant crying, arching of her back and stiffness throughout her tiny body led the Strawns to believe that their daughter’s condition extended beyond microtia-atresia. Seeking the advice of multiple specialists, they dedicated themselves to ruling out more serious conditions.

When Kambri was 2 ½ months old, Stephanie and Jared worried that the eardrum in her “good ear” had burst.  On August 9, 2009, Kambri had her first of many surgeries to explore what might be happening. Instead of finding a burst eardrum, Kambri’s doctor discovered a significant impaction in her ear canal. Once it was removed and the pressure it caused was relieved, Stephanie describes her daughter as a “different baby.”

“The constant tears nearly ceased and she started to smile,” Stephanie recorded on the <a href=”http://redefiningperfect.blogspot.com/”>blog</a>, “Redefining Perfect,” she created to record Kambri’s journey.  “She relaxed and was no longer stiff.  We were able to rule out almost all of our concerns shortly after.”

As they learned more about their daughter’s condition, Kambri’s parents debated how best to approach it. Having learned shortly after her birth that surgical intervention would have to wait until Kambri was five, Stephanie and Jared determined that they’d simply give their baby the best life possible.

“The best advice we were ever given came from a doctor,” wrote Stephanie, “His advice was, ‘if you don’t want her to be self-conscious, then you don’t be.’  We took that to heart and it changed everything for this little girl.”

The Strawns did, however, explore every option to optimize the hearing in Kambri’s left ear and facilitate normal speech development. Kambri began speech therapy at just three months old, she was fitted with a bone-conducting hearing aid at seven months and she was enrolled in Utah State University’s Sound Beginnings program as a toddler.

“We were blessed with incredible teachers and staff and an opportunity to rub shoulders with many amazing families who were also dealing with hearing loss,” said Stephanie. “Kambri made leaps and bounds of progress during her time at Sound Beginnings. It was amazing and we are forever grateful.”   

The Strawns traveled to Primary Children’s Medical Center (PCMC) in Salt Lake City many times over the next several years, but their appointment on Jan. 5, 2016 was different.  This day marked the first of a series of six surgeries Kambri would have during the next year.

Progressively over the next 12 months, Dr. Harlan Muntz,  Kambri’s, ENT-otolaryngologist at PCMC, performed five surgeries to construct an outer ear, using cartilage from her ribcage to form its shape and skin grafts from her stomach and thighs to cover the cartilage. Slowly, her new right ear began to match her left ear more closely.

Kambri’s sixth surgery, which took place at the University of Utah Medical Center on Dec. 28, was undertaken as a means to reconstruct her inner ear to restore hearing. Performing an intricate 4 ½ hour operation that was more complicated than originally expected, Kambri’s surgeon, Dr. Clough Shelton, drilled through her skull to create an ear canal, using a skin graft from her right hip to cover the inside of the canal. He also implanted a prosthetic ossicle (middle ear bone) and fashioned an eardrum using sinew taken from above her ear. The ear was then filled with a protective bolster to keep the ear canal open.

Kambri returned for a post-op visit with Dr. Shelton on Jan. 5, to have the bulk of bolster removed, and the remainder of this surgical packing will gradually dissolve. Although an official hearing test won’t be conducted for three months, Kambri reports that she has a limited amount of hearing in her right ear, and Dr. Shelton has expressed confidence that her hearing will gradually improve over time.

Surprisingly, completion of the surgical construction of Kambri’s right ear has been bittersweet for her family. Shortly after her final procedure, Kambri expressed to her mother that she missed her nubin, and Stephanie has similar sentiments.

“It was an adjustment for us to accept the nubin,” said Stephanie, “and now it’s going to be an adjustment for us to accept the ear.  I don’t know for sure why, but it’s been a harder transition than I imagined.”

What’s ahead for Kambri? Stephanie’s greatest hope is that her daughter can simply live a normal life. She and Jared have promised their daughter a full year off from having additional surgery, and she shouldn’t need more invasive intervention until well into adolescence.

“It’s been a long, hard year and we’ve struggled,” said Stephanie, “but we’ve also gained a lot this year. We’ve learned a lot, we’ve really pulled together and Kambri has blossomed. This is a story not only of the transformation of an ear, but also one of a beautiful little girl who has conquered hard things. It’s been a year of sleepless nights, countless doctor visits and many miles back and forth to Primary’s. There have been many tears, pain meds and barf bags— but it has also been a year of growth, courage, service and gratitude!” 

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jennifer@cvradio.com

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