Separated by the glass barrier of the neonatal incubator, Aisha Atkinson watched over her newborn son, Aries, longing to hold him, to touch him, to love him. Entangled by tubes and wires, he fought for his life while an orchestra of machines whirred in the background.
“You’re going hear a lot of difficult things, baby, but just keep fighting so you can make it home to us,” Aisha recalls telling him. “I was saying this to him, but in a way, I was also saying it to myself.”
Born at Children’s Memorial Hermann Hospital on November 11, 2017, at 23 weeks gestation, Aries weighed just one pound, 11 ounces—small enough to fit into the palm of a hand. During birth, he suffered two massive brain bleeds, leading to the development of hydrocephalus, a dangerous buildup of cerebrospinal fluid in the brain. The damage to his brain also caused him to develop cerebral palsy, a neurological condition that affects mobility and posture. Additionally, Aries may face seizures and neurological issues throughout his life.
For the first 150 days after his birth, Aisha could only visit him in the protective environment of the neonatal intensive care unit, where health care providers worked tirelessly to preserve his brain and help him build vitality. Throughout the ordeal, Aisha credits Aries’ pediatric neurosurgeon from McGovern Medical School at UTHealth, Manish N. Shah, MD, with calming her fears and standing by her family every step of the way.
“From the moment we learned of Aries’ life-threatening brain bleeds, Dr. Shah walked us through some of the hardest decisions we’ve ever had to make,” she says. “I didn’t understand what was happening, and I didn’t know what to expect, but Dr. Shah explained every detail and guided us through every procedure. He treated Aries the way he would treat his own children.”
During Aries’ time in the neonatal intensive care unit, Shah performed three surgeries to help drain the life-threatening buildup of cerebrospinal fluid in the newborn’s brain. With Shah’s help, Aries began defying the overwhelming odds stacked against him at birth, growing healthier and stronger by the day.
From patient to pioneer
Aries may have started life as a patient, but in January 2018, he became a pioneer as the first child to test a groundbreaking wearable brain imaging device that Shah’s team is developing. Called Cap-based Transcranial Optical Tomography (CTOT), it is the world’s first high-resolution, whole-brain functional imaging device that does not require the baby to be put under anesthesia.
“Traditional brain scans using MRI or PET require doctors to put young children under anesthesia, which can open them to major risks such as pneumonia, aspiration, vocal cord damage, and brain damage,” explains Shah. “CTOT is essentially a hat that we place on the child’s head while the child is being held by a caregiver. It uses harmless night-vision goggle technology, near-infrared light, and high-resolution detectors to map the brain, allowing us to pinpoint which parts are not functioning normally.”
In addition to providing a safer way to image the brains of young children, CTOT will help physicians diagnose brain disorders earlier and choose treatments that are more effective for each patient.
“This trial is something that Aries will be proud to have been part of for the rest of his life,” says Aisha. “His resilience has already touched so many people, and through CTOT, he will give hope to countless other children and families who face similar obstacles.”
A million-dollar smile
After graduating from the neonatal intensive care unit in April 2018, Aries began to thrive beyond all expectations. He continues to reach new milestones—including taking steps with assistance—through hard work in physical, occupational, and speech therapy. In August 2020, he joined his peers in day care for the first time, immediately becoming the star of the classroom.
“He always has this million-dollar smile that tells the world he’s not worried about what he’s facing, he’s just living life to the fullest,” says Aisha. “Every day, he teaches everyone around him the true meaning of resilience.”
Aries’ birth may have been punctuated by uncertainty, but his life is defined by love and perseverance.
“Some of the greatest lessons I’ve learned in motherhood are to love your children for who they are and be grateful for the good in life,” says Aisha. “If Aries didn’t have Dr. Shah as his neurosurgeon, I wouldn’t have this beautiful and happy little boy.”