Levi Nipp from Rudy is one of this year’s ambassadors for ACNW. He’s just like every five-year-old boy. He has lots to say, lots of energy and loves to help his dad in the garage work on their old cars. But things haven’t always been smooth sailing for Levi and his family.
“I was 27 weeks pregnant and we had a follow up ultrasound with my OB doctor and they found an amniotic band,” said Levi’s mom, Whitney Black.
Amniotic Band Syndrome is when a lining of the amniotic sac is damaged during pregnancy. It creates strands of tissue that can get tangled around the fetus, constricting blood flow and stopping the baby from growing normally. For Levi, this impacted his right ear.
“I gave birth to him and they got him out and I asked Dr. McClanahan what his little ear looks like and he said just like it did on the ultrasound. And I was just crying,” said Whitney. “It was so squishy and just precious.”
Levi was diagnosed with conductive hearing loss and several congenital defects, including microtia, which means the external ear didn’t form properly.
“Hey Levi, can you tell them what happened to your ear?” asked Whitney to her son during the interview.
“God made it that way,” Levi replied.
It’s a gift from God that created uncertainty for Levi’s future, but it’s a journey those at Arkansas Children’s have been helping him and his family through, step by step.
“I had questions if he was ever going to be verbal and our answer was just, we only hope that he’s gonna be,” said Whitney. “And one day, he found his words and he started jabbering.”
“And he hasn’t stopped,” laughed Levi’s dad, Jon.
He’s been wearing a bone-anchored hearing aid since he was five months old.
“He’s been wearing it for a long time and he loves his BAHA,” said Whitney. “He knows he can’t hear without it so he tells us when the battery is dead.”
He sees Miriam Stafford at ACNW for auditory-verbal therapy, speech therapy and fluency-shaping therapy to help with his stutter.
“I honestly don’t know where we would be without her,” she said.
Levi always gets a special treat after his therapy sessions.
“We always get Chick-fil-A after we go see Miriam,” she said.
Now Levi is using the platform as an ACNW ambassador to share his story to help spread the message of the awesome things those at ACNW do to help kids like him.
“Between the Little Rock hospital and the Northwest Arkansas hospital, both work as a team together so well and that’s what’s so great about Arkansas Children’s,” she said. “Now we’re just so grateful that Arkansas Children’s Northwest provides exceptional care right here so close to home.”
Levi is on a waiting list to get ear construction surgery at Cove Surgery Center in southern California next summer. It’s something his family said is bittersweet because they love his ear as it is now, but they know getting it fixed is what’s best for his future.
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