I Hope You DanceJan 01, 2020 ● By Amy Richmond
Just going through life and watching how people react to traffic, rain and lost luggage will bring this quote to life, but the most remarkable people you meet are those who were given a challenge far greater than these and still manage to have a better attitude than the rest of us. In fact, you might not realize they are encountering a challenge at all.
Gabriella (Gabby) Sanchez is one of those people. “Gabby has faced quite a bit of adversity, and she is so amazingly positive about it all,” says her mother, Carey Farmer. “She always finds the silver lining.”
When Gabby was born in March 2008, the nurse initially thought her left ear had been folded over during delivery, but soon discovered it was barely there at all and rushed the newborn out of the room. Hours of waiting soon revealed Gabby had been born with atresia (a missing ear canal) and microtia, which means “little ear.” Within minutes, Jimmy Sanchez, Gabby’s father, and Ms. Farmer were thrown into a tailspin of questions and research.
Microtia occurs in one of 6,000 or 12,000 babies worldwide, depending on ethnic group, and occurs most frequently among Hispanic, Asian and Native American cultures. More than 90 percent of babies with atresia and microtia have hearing loss. “A lot of kids are also born with syndromes or malformed kidneys, hearts or spines,” Ms. Farmer says, “because that is also when the outer ear is formed. So, they did a ton of testing on Gabby, and she just had the ear. We were really lucky.”
With only 500 instances of microtia per year in the U.S., doctors who specialize in this area are extremely rare. But, as fate would have it, Gabby’s pediatrician just happened to know a local microtia expert. He assured them Gabby’s condition could be rectified but revealed the first surgery would probably be six years out. “And that was the beginning of our journey,” Ms. Farmer says. “We found all these surgeons through an original Yahoo medical group, which later got transferred to Facebook, and now we belong to several Facebook groups. These are the best doctors in the world.”
In 2009, thanks to social media, Gabby’s family discovered and attended a microtia conference where they met and continued to stay in touch with several surgeons, including Sheryl L. Lewin, MD, FACS.
The first years of Gabby’s life were filled with intense research and extensive therapy through Early Child Intervention (ECI), while still moving forward with everyday life. Gabby attended preschool and even tried dance class, but the reverberating echoes of music off the studio walls were too much to handle back then. However, solutions were already being carefully planned. “These surgeries are scheduled two to three years out,” Ms. Farmer says, “because of the surgeons and because you want it to all be covered in the same year for the maximum out-of-pocket. Usually, in January, you do the inner ear surgery and, six months later, you do the outer ear surgery, which leaves six months if you need to go back. It gets to be really, really strategic.”
So, in January 2014, when Gabby was five, they traveled to Charlottesville, Va., to have Dr. Bradley Kesser of the University of Virginia perform her inner ear surgery. “He created a man-made ear canal by drilling a hole behind her small ear, lined the canal with skin from her arm, created an ear drum from additional skin and then separated her hearing bones so they could vibrate,” Ms. Farmer says. And, just like that, her hearing was restored to “normal range!”
For the outer ear surgery, two main options existed. Utilized since 1958, rib cartilage ear reconstruction is a two to four-stage process in which rib cartilage from the patient is carved, stacked and sewn together to create the ear framework. And, utilized in the U.S. since 1991, the Porous Implant Ear Reconstruction (PIER) creates the ear framework using a two-piece MEDPOR implant made from high-density porous polyethylene. The former requires the patient to be around 10 in order to have sufficient cartilage. The latter can be done as early as three or four years old. “As a parent, you question when is the right timing,” Ms. Farmer says. “We have tons of friends who opted not to have any surgeries at all. We are big on parental choice … just like someone who has a sight problem can choose to wear glasses or contacts.”
So, in June 2014, when Gabby was six, they traveled to Los Angeles, Calif., to have Dr. Lewin perform a PIER MEDPOR outer ear surgery. Dr. Lewin has years of specialization in microtia and is the founder of Earicles, Miracles for Ears.
“They traced her good ear and they traced my ear,” Ms. Farmer says. “They tried to guestimate what her ear would look like, because by the time you are 11, your ears are full-size, but at six, they still have to grow. So, they made her a bigger ear to grow into.”
Gabby also got her ears pierced. “It was a very expensive ear piercing!” Ms. Farmer says with a smile. “I had Minnie Mouse earrings,” Gabby says. “I was so excited to get my ears pierced!”
But the excitement was just beginning. Gabby also got a trip to Disneyland, where her Elsa and Anna protective ear cup fit right in, as well as a trip to San Diego, Calif., where the bronze statues at the zoo just happen to have been created by another ear reconstruction surgeon. The next month, Gabby started dancing at Next Step Dance in Frisco and she has been dancing ever since.
But by September of that same year, just nine months after her inner ear surgery, Gabby lost all of the hearing that had been restored. “If you have never had ice cream, you have no idea what it is like,” Ms. Farmer says. “But if you have had ice cream for nine months straight and then suddenly there is no ice cream, you are always going to miss what it tasted like.”
Ms. Farmer says Dr. Kesser was saddened by the hearing loss and fusion of the two ear bones but said a second surgery would have to wait until after puberty to prevent additional regrowth. So, Gabby kept dancing, celebrating differences, including others and consequently developed a diverse group of strong friends. “Gabby has a very caring personality,” Mr. Sanchez says. “She never wants anyone to be left out.”
Ms. Farmer adds, “Gabby has always been one to celebrate her differences and create awareness around that. In doing this, she has created an environment of inclusion among her peers. One of her closest friends has autism, another friend was born with no arms, one is leading change in the dyslexia world, one is an all-star cheerleader and another is at the top of her class in grades. All of these girls together are changing the world and celebrating their differences.”
Throughout her journey, Gabby has become very involved with advocacy groups, the Ear Pals program, the Earicles nonprofit and is often asked to sit as a panelist at microtia and atresia conferences. She is happy to answer any questions someone might have, but warns against asking, “What is wrong with your ear?” She says, “It is like someone going up to my friend who has highlights in her hair and saying, ‘What is wrong with your hair?’” So, what is the best way to ask? Gabby suggests, “What is different about this ear than your other ear?”
As life and questions continued to flow, Gabby’s parents started to notice a change in her implanted ear. After Dr. Lewin had a good look at it, she confirmed the implant had been broken and looking back, they realized a prior hit in the head by a swing must have done the damage. But just like when Gabby’s music skipped during a solo dance performance, they just kept moving forward. “When my music stops,” Gabby says, “I do not know what to do. I just keep dancing. I just go off what I know.”
And, luckily, Dr. Lewin happened to know something new. So, after Gabby had been a panelist at another conference, Dr. Lewin pulled the family aside and said she wanted Gabby to be one of her first patients with the newly-patented Lewin Ear Implant. Prior to this point, all ear frameworks had been constructed by hand, but now, Dr. Lewin had created a way to take a 3D scan of Gabby’s existing ear and use that scan to make a 3D mold for the new ear. “And if a kid is born without two ears,” Ms. Farmer says with excitement, “they can pick the parent’s ears or they can look at her database for a set of ears. That is what is really cool!”
So, in December 2018, Gabby’s family once again traveled to Los Angeles for Gabby, at age 10, to be the third person in the world to receive a patented, 3D-scanned Lewin Ear. “It is just incredible!” Ms. Farmer says. “You can really see how identical they are! People will look at her and think something is different, but they do not know what because it looks so nice!”
During the surgery, Gabby also received an implanted, magnetic Baha 5 conductive hearing aid. “It is screwed into her skull and sits on a magnet,” Ms. Farmer explains.
Gabby elaborates and shares how she cannot wear the hearing aid while she is running, working out or dancing, because the magnet is not strong enough and it falls off. There is a clip that attaches to her shirt to make sure it does not hit the floor, but she only wears the hearing aid during school. “She is probably due for a magnet upgrade,” Ms. Farmer explains, “but you have to be really careful that first year because it can cause headaches.” Gabby’s own hair can also cause interference, depending on how she styles it. So, for now, Gabby is limited to wearing it in a ponytail or wearing it down. And, even when she is wearing the hearing aid, Gabby still has to focus on listening. “I cannot be thinking and listening at the same time,” Gabby explains. “It just does not work for me.”
Despite this, Gabby has managed to excel in dance and develop a special bond with her dance team. “Part of the reason I do dance is because of the personality I bring to my dancing,” Gabby says. “I do not like people to be sad. I like them to be happy.” So, despite the challenges, Gabby will just keep dancing.