From NICU Struggles to Joyful Childhood: Akorra's Story with OU Health’s Exceptional Pediatric Care
Four-year-old Akorra’s fight for life began before she was even born. Diagnosed with a severe diaphragmatic hernia during a routine prenatal sonogram, her tiny body faced immense challenges. Despite the prognosis, Tim and Marisa Trevino from Lawton, Oklahoma, put their trust in the experts at OU Health to guide them every step of the way.
A congenital diaphragmatic hernia (CDH) is a birth defect where there is a hole in the diaphragm, the muscle that helps with breathing. This hole allows organs like the liver, stomach and intestines to move into the chest, crowding the lungs and heart and making it hard for them to develop properly.
Tim and Marisa, already parents of two daughters, were shocked by the diagnosis. They hadn’t heard of CDH but were told to find specialized care to prepare for their baby’s birth and ongoing treatment. They transferred to Oklahoma Children’s Hospital OU Health under the care of pediatric surgeon Dr. Jeremy Johnson, M.D., associate professor at the University of Oklahoma College of Medicine. Dr. Johnson explained the severity of Akorra’s condition, and months before she was born, he and his team had mapped out a care plan to save the baby’s life.
Tim and Marisa allowed one of their daughters to name her baby sister, but it had to start and end in the letter A. She chose Akorra, inspired by the animated show “The Legend of Korra.” In the series the main character fights to keep her city safe, and tiny Akorra would also have to be a fighter to survive her condition.
The Battle Begins
Little Akorra was born on Nov. 19, 2020, with only 5% of her diaphragm. She was taken to the neonatal intensive care unit (NICU) immediately for specialized, around-the-clock care. Her CDH was classed as a Type D, the most severe defect. Her right lung was underdeveloped, and her left lung was so small it was just a bulb. Akorra’s digestive system had pushed into her respiratory and circulatory systems, displacing her heart. The tiny girl needed help to breathe so she was placed on extracorporeal membrane oxygenation (ECMO).
ECMO is a medical treatment that supports patients with severe heart or lung problems. It works by circulating blood outside the body through a machine that adds oxygen and removes carbon dioxide to let the heart and lungs rest. This process temporarily takes over their functions.
Babies born with CDH need surgery soon after birth to move the organs back into the abdomen and repair the hole in the diaphragm. This helps the lungs have enough space to grow and function better.
Akorra went into surgery with Dr. Johnson and team the morning after her birth to repair the CDH.
Surgery to Repair the CDH
In CDH surgery, doctors make a cut in the baby’s belly to reach the diaphragm. They gently move the organs — like the stomach, intestines, and liver — back where they belong. This gives the lungs and heart space to grow.
Then, the surgeon repairs the hole. Sometimes stitches are enough, but in more serious cases, a synthetic patch is used. Akorra’s hole was so large that Dr. Johnson used a patch and attached it to her spine and ribs because there wasn’t enough tissue in her chest to hold it in place.
The surgery went well, but on Thanksgiving Day 2020, Akorra had bleeding in her brain due to the blood thinner used with ECMO. Taking her off ECMO was a hard choice. There was a 50% chance she wouldn’t survive without it, but she couldn’t stay on it either. Tim and Marisa knew the risks but trusted Dr. Johnson and his team. Akorra was removed from ECMO and placed on a ventilator.
To everyone’s relief, she kept fighting and was able to breathe with the ventilator’s help.
The Fight Continues
Akorra stayed on the ventilator for a couple of months. During that time, doctors had to drain her lungs and perform another CDH procedure. She spent 142 days in the NICU. Her parents stayed by her side, cheering her on.
Even though Akorra faced many challenges, the journey was especially hard for her parents.
“Akorra had breathing tubes that affected her vocal cords, so she couldn’t make any sound,” said Tim. “Watching her cry silently was heartbreaking — we had to read her emotions by watching the monitor.”
The Trevinos were supported by their family and the team at Oklahoma Children’s Hospital.
As Akorra grew stronger, her lungs also grew. Finally, she was able to go home.
A Happy, Thriving Girl
Akorra has made amazing progress. Her left lung is almost fully developed, and her heart is in the right place. Tim says she’s a happy, energetic little girl.
“To look at Akorra, you’d never know there was anything wrong with her,” said Tim. “She runs and plays like any other child. She loves to sing and dance, and she is always so happy.”
Akorra’s 7-year-old sister, Amaya, has taken a hands-on role in helping her little sister. Akorra needed a feeding tube for over a year, and Amaya helped teach her how to eat and drink by mouth. Now, they play together, and Akorra learns from her big sister. She also has a little sister, Aria, who is 2.5 years younger.
Dr. Johnson and his team have cared for Akorra since birth. They planned her surgeries and ensured everything went smoothly.
“OU Health has provided exceptional care for Akorra,” said Tim. “We trust them completely and are willing to make the 100-mile trip to see her doctors. They have been with us since the beginning, and we stay in contact to keep them updated on her condition.”
The survival rate for a defect as serious as Akorra’s is less than 50%. Dr. Johnson says OU Health can care for children with very complex conditions because of its expert team and resources.
“We have all of the resources a sick child could need, 24/7,” said Dr. Johnson. “That's not true of anywhere else in Oklahoma.”
Akorra had a large team — NICU doctors and nurses, neonatologists, neurosurgeons, heart and lung specialists, GI doctors, and more. They all worked together to help her get to where she is today.
“What makes Akorra so special is that she had the worst kind of defect,” said Dr. Johnson. “She required ECMO, had some complications and underwent different procedures, and when you look at her, her development is completely on par with any other happy 4-year-old. It’s truly a privilege to have the opportunity to care for children with complex medical problems like Akorra’s here at OU Health.”
Expert Care for Cardiac and Vascular Conditions
For families facing complex medical challenges, Oklahoma Children’s Hospital offers not just expert care, but a caring community that helps every child thrive.
If your child needs a surgical procedure, the pediatric surgery experts at Oklahoma Children’s Hospital stand ready to provide care for the full spectrum of routine and complex children’s health conditions. Learn more about pediatric care at Oklahoma Children’s Hospital at (405) 271-4357.
