It was a little over a year ago when I was first introduced to the Prince family and Tatum Kentli’s story. Throughout the past year, this charity and our Champions Care Team has supported the Prince family by passing through the best resources, awareness and facts/figures about hearing loss.
The story you’re about to read is about a little girl who’s journey is just beginning. At the tender age of three years old, this little girl has overcome more than many of us adults will in a lifetime. After over a year of fighting, we were able to partner with the family as they embraced the challenge of advocating and fighting for their daughter’s God-given right to hear.
Our Songs for Sound charity provides services to thousands of people of all ages, families and our community partner leaders (organizations who serve communities.) The issues of hearing loss awareness are deeply complex. As humans, we tend to state things as we believe them, often overlooking the need to dive in and fact-check or ensure our information is correct. We have met and counseled so many adults and parents who were given poor information and insufficient guidance.
Our mission has not changed. We believe in spreading AWARENESS, increasing ACCESS & encouraging ACTION. We do that through outreach and free hearing health events with free screenings and more, then supporting those who need follow up with an audiologist through our Champions Care Team and finally (soon) Hope programs designed to support people for a lifetime. We have proven the need for our charity and mission over the past eleven years, yes over a decade, through tried and true RESULTS. We meet people where they are in every day life, we lessen confusion around hearing loss and generate awareness. We then coach every “champion” through at their own pace. Finally, we are hearing partners for a lifetime.
Tatum was born on April 22, 2019. She was the Prince family’s, as mom Susan puts it, the “surprise baby”! In fact, her mom shared she was going through her own health issues at the time and was actually scheduled for a hysterectomy. The day after they found out Susan was pregnant with Tatum Kentli, she was scheduled for her surgery. Susan knew God had other plans.
“She’s not viable. She won’t make it.”
At one of Susan’s routine check ups, she and her husband heard the most horrific words. The doctors discovered fluid on little Tatum’s brain and Susan and her husband had to hear words that no parents could ever imagine hearing, “Your baby is not viable. She is not going to make it.”
Susan shared that she prayed and knew Tatum was a miracle and they would continue with the pregnancy. At 32 weeks, there was improvement and Tatum was developing, but still, doctors said, “she will make it, but she is going to have severe disabilities and won’t survive long after birth.”
Still, Susan kept her faith and continued to fight for her daughter. She continued to believe her daughter would beat the odds and not only make it, but live a life that inspires so many others.
Faith in Action.
Most of us can imagine the joy we expect when anticipating the birth of our child. We expect health, height and weight, unspeakable joy. Most of us cannot imagine what it would feel like giving birth to a child and also continually speaking faith over a very bleak situation. Susan and her husband had to not only prepare for the physical labor of childbirth, but also the emotional exhaustion due to the roller coaster ride they had been on throughout the pregnancy. Will my child be born alive? Will my child have major disabilities? While my child make it? Will I get to hold my child? Personally, I can’t imagine the strength they both had to have that day.
This is the part of this story you must truly embrace. It’s the essence of why Songs for Sound exists. We want people with disabilities to know they can overcome them to live their best lives. Every person’s plan may not be the same, but we want to be a small part of helping them live their best lives.
Miracles happen in many forms. Tatum Kentli is more than a miracle, she’s an example of faith in action and that in the midst of much ugliness in this world, there is a wonderful God who is doing great things everywhere. We just have to stop, look around and pay attention!
More and More Challenges.
The day of surgery arrived. Neuro surgeons were present due to the bleak outcomes expected by her healthcare team. They were prepared and advised the Prince family “she will need life support equipment once she’s born.”
To add to Susan’s already excruciating day, there was an odd power outage. Yes, Susan was scheduled for a c-section and the power was out! No storms, just something else for her to deal with. Susan gave birth and had a c-section with machines using generator power!
A MIRACLE CHILD IS BORN.
On October 22, 2019, Tatum Kentli was born! Right here in this story is where you may be expecting sadness, however:
- TATUM KENTLI BREATHED ON HER OWN!
- TATUM KENTLI COULD EAT ON HER OWN!
- TATUM KENTLI WAS SOON DISCHARGED FROM A SHORT VISIT IN THE NICU TO HER MOM AND DAD!
- TATUM KENTLI WAS SENT HOME AT 2 WEEKS OLD!!!
HER JOURNEY TO HEAR.
Nearly half of children born with hearing loss have additional disabilities. While Tatum Kentli’s outcomes weren’t even close to being as bleak as doctors anticipated, the doctors told the Prince family that TK did have holoprosencephaly, basically where parts of the brain develop abnormally. After more evaluation by experts, they were told TK does NOT have this, rather her folds in her frontal hemisphere are malformed. Long-term, there can be delays such as speech delays and also there is a connection to hearing loss.
95% of Children Born with Hearing Loss are Born to Hearing Parents.
Tatum Kentli failed her newborn hearing screening at the hospital and, like our Champions Care Team hears often from misinformed parents, the hospital team said “she’s probably fine. don’t worry about it. It’s probably fluid.”
Most parents may not know much about hearing loss statistics or facts. Parents “trust” healthcare professionals to provide correct and informed information on behalf of their children. Sadly, we hear too often that parents are given incorrect and bad information bout hearing loss. It is often “dismissed” as “fine”. Every day after that bad information, the child is missing sounds, language, speech development and major milestones directly related to hearing and speech. All of this could be corrected by simply scheduling post hearing screenings every 2-4 weeks until a 100% accurate “pass or fail” is achieved.
ANOTHER TEST IS ADMINISTERED.
Thankfully, TK’s team did schedule the appropriate follow up! At two months of age, another test revealed “Tatum Kentli is profoundly deaf in both ears.”
Imagine everything this family has gone through. Imagine sitting their hearing your child is profoundly deaf.
The reality is over 32 million children have hearing loss in America. Over 500 million people in the world have a DISABLING hearing loss.
Hearing Aids, for Now.
Around six months of age, TK received her first set of hearing aids. Thankfully, they began to discuss the cochlear implant. This is where things get a little confusing. Tatum Kentli’s hearing loss would fluctuate. There are many conditions where this happens. However, we believe as do many of the top Neurotologists in the world, that when a child is not hearing well enough for hearing aids, even if they have some residual hearing or fluctuating hearing levels, they won’t get enough sound to develop speech. It is the opinion of many, based on statistical information, that we need to first try to give a child access to hearing and spoken language. The outcomes for a lifetime are much improved if a child can communicate with the world around them.
AWARENESS Really, Really Works.
I’m not shy about telling my own daughter’s story. See our MISSION & HISTORY PAGE to learn more. When we share our own challenges and how we overcame them, others will certainly be blessed. My decision to leave a very secure development position at Vanderbilt University Medical Center to start Songs for Sound wasn’t an easy one. I actually worked at Vanderbilt and built the charity in every nook and cranny of my days for two years before resigning to build SFS to what it is today. A decade later, Lexi’s story is still changing lives. I get call after call from families in crisis. I meet so many people living frustrated with hearing loss at every free hearing health clinic event we host. My phone rings off the hook and I receive so many texts every week from families in crisis.
The most special part of this story is “how” I was introduced to this precious family. My second love….FASTPITCH SOFTBALL. As many of you know, Lexi has accomplished much at the young age of 14 in the travel softball world. One of her best softball friends and former catcher’s mom knew the Prince family. Susan and her husband also have a 14 year old daughter who plays travel softball!
When the mutual mom we knew, Alycia Hodo, heard Tatum Kentli’s story, she said “I know a woman you must talk to!” Alycia has known my Lexi for many years. She’s stayed all night with them, she’s swam with them, we’ve traveled all over the country together and for a little while, our daughters were inseparable.
So, awareness works. Had they never known Lexi and respected and loved her accomplishments as a deaf athlete, appreciated our work at Songs for Sound, we may never have met this amazing family and helped them.
When I was introduced, I simply did what I was called to do. I gathered resources, I talked through decisions, I helped by getting second opinions from some of the best Neurotologists I know. And more importantly, I PRAYED. I prayed and I prayed and I prayed for this baby and her mom.
Tatum Kentli Gets her Hearing Miracle.
In addition to Tatum Kentli having some additional health complications including spinal fluid leakage, there were no cochlear implant surgeons in their area. In fact, many families living in rural communities have to travel two or more hours to find a medical center that can do the cochlear implant surgery. They had even more difficulty finding an AVT - auditory verbal therapist.
Through our counsel and others, the family ended up at Alabama Children’s (Birmingham, AL). Still, inconclusive results left the family feeling hopeless. However, the Prince family continually fought for Tatum Kentli’s right to hear.
On Monday, May 16th, TK had her cochlear implant surgery at Alabama Children’s Hospital. Midday, I checked in on the family and sadly received news that it didn’t go as well as planned. Her spinal fluid was leaking. She had many things to overcome, but for TK, that’s just another day. At that point, I engaged two very renowned surgeons for consults and passed the information along to the Prince family for their medical team. TK had an amazing doctor, but her health conditions do in fact complicate things.
That week, Susan and I kept in contact about her and we prayed. We prayed and spoke the words of healing and life into her. It was every day, we prayed for specifics.
By the end of the week, TK had SIGNIFICANT improvement. One week after the surgery, SHE WENT HOME and to quote her mom, Susan, “it’s as if nothing ever happened.”
ACTIVATION DAY! I CAN HEAR!
I could try to sum up into words the video of Tatum Kentli hearing for the first time, but I won’t do it justice. I will simply share it and allow you to see how this beautiful story, doesn’t end, but is just beginning….Tatum Kentli can hear and we here at Songs for Sound are so grateful we could be a small part of her sweet little story.
To learn more or donate and help us continue giving the gift of hearing to children, adults, veterans and seniors, visit SongsForSound.org.