A Christmas Mira-cle: Recovering from an Arteriovenous Malformation

Eleven-year-old Mira was beginning her sixth-grade year when she suddenly became confused and disoriented and then suffered a seizure. She was rushed by ambulance to a nearby emergency room in Norwalk, Connecticut, where a CT scan revealed an arteriovenous malformation, or AVM, a ruptured blood vessel in her brain, which occurs in 150 out of 74 million children in the United States. Mira was transferred by helicopter to Connecticut Children’s Medical Center, where she underwent an emergency craniectomy to relieve pressure on her brain.

“Mira had a bleed on the right side of her brain that occurred spontaneously,” said Dr. Diana Haddad, inpatient medical director at Blythedale Children’s Hospital. “She went from waking up on a typical, normal day to being hospitalized and requiring emergency surgery by the end of that same day.”

Once stabilized in the pediatric intensive care unit, her family was told that intensive rehabilitation would be the next critical step in her recovery, though doctors could not predict her outcome. In October, Mira was admitted to Blythedale Children’s Hospital for comprehensive rehabilitation following an acquired brain injury.

Dr. Haddad recalled a meeting with Mira’s care team and her family shortly after admission.

“It was a really powerful meeting,” Dr. Haddad said. “The prolonged hospitalization and acute care phase can be so consuming for patients and families that it’s difficult to imagine how much work still lies ahead. I remember feeling that it was the first time Mira’s parents truly began to understand how impactful Blythedale could be in helping return her to who she was before her injury.”

Mira required intensive rehabilitation due to dense weakness on the left side of her body caused by damage to the right side of her brain. Initially, she was unable to move her left arm or leg because of both physical limitations and impaired sensory coordination and perception. 

Jenna DiVenuto, a speech-language pathologist at Blythedale, worked with Mira five times a week. Mira had been admitted to Blythedale with a nasogastric tube to safely administer medications and provide supplemental nutrition. Early sessions focused on chewing soft foods, such as a bagel, before progressing to toasted foods and encouraging use of both sides of her mouth. While the nasogastric tube helped provide nutrition, it became a barrier to eating. After discussing Mira’s motivation and progress, the care team determined the tube could be removed.

“Mira was completing 75 percent of her meals and more,” DiVenuto said. “She was meeting all of her goals, and we knew she was ready.”

Mira also made significant progress in physical and occupational therapy. When she arrived at Blythedale, her body was deconditioned from her PICU stay, and her left shoulder was subluxed, causing severe pain. Occupational Therapist Bridget Horgan and Senior Physical Therapist Robert Radomski used kinesiology tape to support her shoulder joint as she regained strength.

Radomski worked with Mira at her bedside to help reconnect sensory awareness and perception on her left side. From there, therapy progressed to walking with a walker and taking slow, deliberate steps. Today, Mira is walking on a balance beam with minimal assistance and can even walk backward.

In occupational therapy, she has regained left-side movement and fine motor control, even beating Horgan in games of mancala and UNO.

In total, Mira was hospitalized for three-and-a-half months. With Mira away from home, her family chose to delay holiday preparations. On Friday, December 19, just six days before Christmas, Mira returned home to find her Christmas tree waiting to be decorated.

For Mira’s family, gathering together for Christmas Eve dinner is a cherished tradition.

“The idea that we’re all going to be whole again and together, especially since this is the holiday time right now, gratitude abounds,” said Franciska, Mira’s mother. “Because honestly, we didn’t know if we were going to have that just a few months ago. She is our Christmas Mira-cle.”