Our patients are the real heroes of Hearts for Hearing’s 20-year history. Henrietta, our newest hero feature, lives in the Tulsa area today. Her story begins in a remote Alaska hospital where she was born. Her mom, Mary, calls Henrietta “a miracle baby” who, as she’s grown, has defied medical odds, continuing to overcome one challenge after another.
Henrietta experienced hearing loss as a young adult. “Music is her love language,” says Mom, “and my vibrant, bubbly, gregarious child who loves everybody – and wants to sing and dance with you – found herself in an increasingly silent world. She was in depression.”
To fully appreciate Henrietta’s story, it is best to begin at the beginning. She was born at 26 weeks with fetal alcohol syndrome and experienced an intracranial brain bleed at birth. She was in and out of the hospital and required a g-tube for nutrition. At 18 months, her birth family brought her to the hospital and requested comfort measures only. Henrietta weighed less than 6 pounds. Mary, a nurse at the hospital, experienced what she calls “an immediate calling to be a medical foster parent,” then adds, “It took some convincing with my husband and two sons – ages 14 and 9 – but after they met her, everyone was on board.”
Mary says Henrietta remained in the hospital until she gained weight. “In the beginning, she was so weak, she couldn’t hold her body up, she wouldn’t look you in the eye, she had severe autism … the best way to describe this tiny child was like a wounded animal.” When Henrietta reached eight pounds, her foster family was allowed to take her home. Medical professionals counseled that she was not expected to live. Over the course of seven years, she transitioned from a feeding pump and tube to traditional feeding. Mary tells us, “Henrietta was becoming healthy, happy, and in love with her new foster family as time passed.”
When Henrietta became eligible for adoption, Mary recalls, “we were all head over heels in love with this little baby, and we applied to adopt her however there was a lot of opposition because Henrietta is 100% Alaska Native, and we are not. After a thorough process of interviews with Henrietta’s birth family and others, Mary tears up as she recounts the decision to allow them to move forward with adoption. “I’m so blessed because I’ve had the opportunity to watch her grow up.” Henrietta’s adoptive parents eventually divorced, and both have since remarried. She calls her stepdad, Ron “Poppa Bear” and maintains a strong relationship with all four parents who have watched her struggle and overcome all kinds of challenges. She is also close with her older brothers and their families too.
In 2010, the family moved from Alaska to northeastern Oklahoma. During her lifetime, Henrietta has survived over 50 surgeries and several life-threatening incidents. As she’s grown, music has always relaxed her, and she loves it. In 2017/18 Henrietta was awarded a Make-a-Wish request, and she chose to go see Adam Levine in Los Angeles on the set of The Voice. “He’s her favorite,” says Mary, “along with Elton John, Blake Shelton, Christina Aguilera, and contemporary Christian artists Casting Crowns and Lauren Daigle. “
In 2019, we began noticing a decline in her hearing. Following a comprehensive evaluation and diagnosis, an ENT specialist performed surgery, but stepped out during the procedure to tell us that she did not have hearing in her left ear. The doctor worked to help preserve hearing in her right ear. Following recovery, he referred us to Hearts for Hearing, where Henrietta was initially fitted with hearing aids. “Dr. Jillian worked diligently with us and after a time shared with us that she believed Henrietta might be a good candidate for cochlear implants. She and Mrs. Kara at Hearts for Hearing are heroes to us.”
Unfortunately, due to treatment required to clean-up and prepare the inner ear for implantation, Henrietta’s surgery had to be postponed for six months. “Those six months were one of the slowest parts of my life,” recalls Mary. “But the team at Hearts for Hearing diligently provided therapy with her to preserve optimum sound.”
In March 2022, Henrietta received her right cochlear implant. “We received it in the nick of time because her cochlea was ossifying and her hearing deteriorating,” says Mary, “So all I can say is God is good, and he works miracles.” Several weeks later, we attended Henrietta’s sound activation appointment, and remarkably, within a few days, she was choosing to wear her processor 12 hours a day.” Mary says, “Henrietta has her music back … it’s been a blessing … and we just recently had our one-year all-clear.” To celebrate, Mary is considering taking Henrietta to Las Vegas for a Maroon 5 concert.
“I just want to stress the importance to not delay at the very first indication of hearing loss. Seek treatment from qualified professionals and follow their advice. Also, be an advocate. I also want to say how much I appreciate Dr. Jillian and Mrs. Kara. Their continuity at appointments and communication with me and Henrietta is phenomenal. Most of all, I appreciate how they work with her, and they speak directly with her. That is important to me.”
Hearts for Hearing was founded in 2003 with a mission of providing hearing technology and speech therapy services at no out-of-pocket costs to families with children who were born deaf. 20 years later, we are still teaching babies and children born deaf to listen and talk. Our services have expanded to include adult hearing care with offices in Oklahoma City, Tulsa, and Shawnee. Our team of professionals has grown from our original three people to 117 now. Hearts for Hearing continues to provide the first set of hearing technology and therapy to children at no out-of-pocket costs to families, and now includes Newborn Hearing Screen services, major research initiatives, Eyes Open Ears On programming, and its own 3D ear mold lab.