Kindergartner struggles with rare condition

Kaleb Flores - Submitted photo

Kaleb Flores – Submitted photo

Every expectant mother prays for a healthy baby, and most bring home a tiny perfect bundle to love and care for.

But some babies arrive in this world with special needs. Little Kaleb Flores is 8,000-10,000 babies born with a rare condition called bilateral microtia and atresia, that is, he lacks both external ears and also the external ear canal.

His mother, Elisa Flores, remembers waking up from her C-section with her mother crying beside her bed trying to explain something about her new son. The next day the doctor explained Kaleb’s condition. Her beautiful baby boy had no outer ear or ear canal, and his condition affected both sides.

There had been many ultrasounds during Alisa’s pregnancy, but she said nothing ever caused any alarms so she had expected a perfectly uneventful delivery.

For the first week of his life, the baby stayed in NICU for testing with Elisa there every night – a distraught young mother trying to understand what went wrong, and blaming herself. At just 19, she had to face her son’s condition, what it would mean for him and how she could help him grow up.

The inside of his ear has developed normally so he can hear but sounds are muffled. He is able to hear because sounds are carried by the skull and other bones in the head and conducted to his normal inner ear.

Elisa said that during the past year he his speech has improved – he is able to put together simple words, but it’s hard for him and when he gets excited he’s almost back to baby talk. The fact that he can answer some of her questions gives his mother great hope that he will advance even further.

With Elisa working or in school, Kaleb’s been in daycare since he was 5 months old, but he started kindergarten this year and Elisa isn’t sure what that will mean for him.

“We all know kids can be cruel. But despite all my fears, I’m excited to see him experience something different, to see what the school can offer him. He’s a smart little boy without a fear of anything,” she said.

He’s been doing well in school and they’re making sure he wears his hearing aid – which, understandably, he doesn’t like – but it’s the best thing for him.
Kaleb faces four surgeries with Dr. Arturo Bonilla in San Antonio, Texas, to reconstruct his ears beginning next March. After healing for five months, he will go to a specialist in Virginia for his ear canal.
Kaleb has a three-year-old sister who does not have Kaleb’s condition. They are typical siblings who care about each other and accept each other as they are. Through the past five years, Elisa said her family has been very supportive and accept Kaleb as he is. Elisa said she wants her family to know that they are her strength and she could not do this without them.

Kaleb’s family also has strong ties to Immokalee. Elisa’s grandparents are well known crew leaders and semi-truck driver for Lipman & Lipman – Fortino JR & Sr, Bobby, David Garcia. Her dad is Narciso Flores, Her sister (Kaleb’s aunt) Lory Molina is a nurse at the healthcare network clinic in Immokalee and her mom (his grandma) works for the same company but at the iTECH clinic.

“Kaleb is a blessing in himself. I had him when I was 19 and was and still am a single mother. He’s taught me a lot. How to be a stronger person. A lot of people thought he wouldn’t talk or hear good, but he does speak to me, he does listen to me, he does hear me. My family and I love him beyond words. We see nothing different in Kaleb. He’s an amazing little boy with such energy. Without my family I’m not sure how I would’ve done it. They go above and beyond for us. This next year is the scariest but my family make me feel better because they will be there every step of the way. We’re excited for what’s to come.”

His mom expects to have Blue Cross Blue Shield to help pay for the out-of-state surgeries, but the family will still be left with crushing medical debts.

Elisa has opened a gofundme account because she knows Kaleb’s surgeries will be very expensive: http://www.gofundme.com/Ears4Kaleb

To find out more about microtia and atresia, you can check out these links: Dr. Arturo Bonilla http://microtia.net/ and microtia and atresia http://earcommunity.com/microtiaatresia/

Patty Brant, can be reached at cbnews@newszap.com

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