Brittani Tomic is moved to tears every time she hears the lyrics of Hillsong UNITED’s song “Another in the Fire” because it reminds her of a very dark period in her family’s life, as well as the light that finally appeared on the long journey to a diagnosis for her daughter.
In fall 2018, at the tender age of 3, Arzola (Zola) Tomic almost bled to death following a routine surgery to have her tonsils and adenoids removed, leading to the eventual discovery that Zola had a rare connective tissue disorder called Ehlers-Danlos Syndrome (EDS).
For Brittani, the trauma of that time 2 ½ years ago is still very fresh.
“When I was pregnant with Zola there were some concerns with my 20-week ultrasound,” she said. “The baby had a cyst on her brain, a white mark on her heart, and other suspected chromosomal abnormalities. However, when she was born everything appeared normal and an MRI of her brain at 6 months old showed the cyst had disappeared.”
Troubling signs ahead
But Brittani says there were still indications that something was off with Zola.
“She was extremely fussy, didn’t sleep well and she wasn’t progressing like a normal baby,” she said. “She wasn’t hitting developmental milestones like turning over, crawling, sitting up, etc.”
Brittani shared her concerns with the family’s pediatrician, Dr. Sabrina Ben-Zion, who referred her to Help Me Grow, a state-wide program that promotes healthy growth and development for babies and young children.
“Even when working with the Help Me Grow therapist on sitting up, Zola’s legs were stiff and hyperextended, almost like a doll’s legs would be,” she said.
When Zola turned 2 she was prone to ear infections that didn’t respond to antibiotics.
“She began having febrile seizures from her fevers,” Brittani said. “She contracted the flu and then pneumonia which landed us our first inpatient hospital stay at Akron Children’s.”
When she began suffering from grand mal seizures (where she would experience loss of consciousness), testing was ordered. An inpatient stay in the epilepsy monitoring unit (EMU) ruled out epilepsy or a neurologic disorder, and sleep apnea became the chief suspect as the cause of her seizures.
“Our ENT (ear, nose and throat doctor) felt her seizures could be a result of sleep apnea due to the obstruction her enlarged tonsils and adenoids were causing,” said Brittani.
The family agreed to the routine surgery to remove Zola’s tonsils and adenoids, not realizing the complications that lay ahead that would put their daughter’s life in jeopardy.
“Zola came through the surgery just fine and we were sent home with typical recovery instructions,” said Brittani. “Six days later she was playing in her room 1 minute and the next minute she was unconscious laying in a pool of her own blood.”
Rushed to the nearest hospital, Brittani was dismayed when providers there chalked her symptoms up to a severe nosebleed. When she began throwing up blood again while still at the facility, she was transferred to Akron Children’s where she was admitted for observation.
“We were told Zola likely had a rare bleeding complication, called a post-operative hemorrhage,” said Brittani. “She was put on a steroid and discharged home.”
Just 3 days later Zola stumbled into her parents’ bedroom in the middle of the night covered in blood once again.
“There were bloody hand and footprints leading from her room to ours,” said Brittani, who then watched her daughter fall unconscious to the floor.
Emergency surgery leads to eventual diagnosis
Transported back to Akron Children’s via EMS, Zola was greeted by the emergency department’s trauma team who prepared her for surgery as they struggled to stabilize her vital signs.
“They talked about doing everything they could to save her, including blood transfusions,” she said.
It turns out Zola had a blood clot in her throat, as well as a slow-drip hemorrhage from the lower part of her incision from her initial surgery 10 days prior. Her surgery team immediately reached out to the hospital’s hematology/oncology team to look into a bleeding disorder. But like everything else, Zola’s tests came back normal.
After returning home, Brittani was contacted by a friend who told her about someone she knew with a condition called Ehlers-Danlos. After some research of her own, she felt many of the symptoms matched up to Zola’s and mentioned the possibility to Zola’s hematologist. Further testing in the hospital’s genetics and rheumatology departments revealed Zola had Hypermobile EDS (a group of genetic disorders that affect the body’s connective tissues) as well as juvenile arthritis (a condition that often co-exists in people with joint issues).
Zola’s Zebras helps kids with EDS
During Zola’s health crisis, Brittani, and her husband Peter, relied heavily on their faith and family as major sources of strength and support. Brittani says she felt called to do even more and founded a nonprofit she named Zola’s Zebras to help other kids with EDS. Zebras, which are unique and known for their rare black and white stripes, are considered the national mascot for rare diseases. The charity sponsor gifts for 3 kids with EDS this past Christmas.
“COVID has delayed most of our fundraising plans, but we have been successful in holding blood drives and have collected 125 units to date,” said Brittani. “Our ultimate goal is to raise money to help pay for genetic testing for kids with EDS that may not be covered by insurance.”
As the middle child of her family, Zola, now 5 years old, is doted on by her 12-year-old brother Brystin, and looked up to by 4-year-old sister Milena. She attends Medina Christian Academy and is currently in kindergarten. She is active in dance, junior cheerleading and gymnastics.
“These activities help her develop the muscle strength she needs to control her hypermobility,” said Brittani. “We keep a close eye on her. If she is hurting, we encourage her to stop and rest.”
Zola is currently doing well. Brittani credits some dietary changes to a decrease in Zola’s pain and inflammation including reduced sugar intake, eating more organic and gluten-free options and limiting red meat.
She will continue with periodic physical therapy evaluations as well as genetic testing to keep an eye on any disease progression. While there are still many unknowns about the long-term effects of EDS, the Tomics hope Zola’s story helps put a face to this rare disease.
Brittani believes there is a higher purpose to why Zola got sick and says one of her favorite quotes by Japanese writer Haruki Murakami helps sum it up: “Once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”
“From the darkness of Zola’s diagnosis came the light. We want to help be the light for all kids with EDS,” said Brittani. “I know what it feels like to struggle, and to struggle alone. I want to be the person who helps others.”