Harrowing journey for ‘Christmas miracle’
Born while fleeing storm, she has toiled and survived.
— The story of the premature AKRON birth of baby Emma Perry and her twin brother, Eli, after their mom fled to Ohio from Hurricane Irma is harrowing enough.
But the tale of Emma’s subsequent medical issues — a severe case of bacterial meningitis, a blood infection, a brain infection, which caused hydrocephalus (or water on the brain) and suffering a stroke and seizures — is enough to have her family and doctors at Akron Children’s Hospital convinced that she’s one strong fighter.
“She is a Christmas miracle,” said her grandmother, Kim Casanova, who is originally from Youngstown, and lived in Northeast Ohio until she moved as an adult to Florida.
The fact that her daughter is alive and doing well after so many setbacks has reaffirmed Amanda Perry’s faith in God.
“I would consider myself a Christian, but I had my doubts until I had [the babies]. This scenario with Emma is what led me to believe again,” said Amanda, 28, who feels any other baby would have died.
Emma’s pediatric neurosurgeon, Dr. Gwenyth Hughes, who has performed three surgeries on her at Children’s, said: “She’s been pretty impressive. She’s already overcome a lot but I think she’s going to overcome a lot still.”
Hughes said she usually doesn’t see patients with meningitis because antibiotics typically take care of the infection.
As strange as it sounds, Emma having a stroke, which Hughes said was in an area of the brain where she expects minimal impact, and seizures probably saved her life.
“She had almost completed what would be the routine course for meningitis and we would have presumed the antibiotics had done their job,” Hughes said.
“If she didn’t have the stroke and the seizures, they probably would have let her go home and she probably would have died” since she could have been in transit back home or in Florida with no doctors knowing her medical background,” the neurosurgeon said.
Miracles
Nothing about threemonth-old Emma’s life before birth or since has been short of a miracle, her mother said.
Even before Emma was born, her life was in danger.
As Hurricane Irma was barreling toward the family’s mobile home in Okeechobee, Fla., Amanda, nearly 32 weeks into a high-risk pregnancy with twins, knew she had to get her family to safety. The eye of the hurricane was estimated to hit on Sept. 9. The closest hospital was 1½ hours away.
“It would be just my luck that we’d be going to the hospital and debris would be flying everywhere.”
On Sept. 8, Amanda drove in a caravan of three vehicles of relatives, including her mom and dad, siblings and spouses, her four other young children and two Chihuahuas, toward her sister’s house in Norwalk.
Left behind was Jake Perry, her husband and father to the twins and their 2-year-old. A Department of Transportation worker, Jake needed to stay for debris cleanup.
Just hours after arriving in Norwalk, Amanda’s water broke in the middle of the night. She knew she had a risk of premature labor because of a condition she had called polyhydramnios, or an excess of amniotic fluid caused by her diabetes. But she didn’t think she’d have the babies in Ohio. Her doctor in Florida had planned on Amanda giving birth at 34 weeks. She was at 31 weeks and 6 days.
Amanda also knew that her babies needed to be at the highest level neonatal intensive care unit after being born and that the closest was at Akron Children’s Hospital. She wanted to have the babies as close to the pediatric hospital as possible.
She was in labor when she arrived at Cleveland Clinic Akron General Emergency Room on Sept. 9.
Dr. Abdelaziz Saleh, a maternal fetal medicine doctor, was called to deliver the preemies. The labor progressed quickly and Amanda was rushed to the operating room and later found out that Emma’s heart rate had dropped because her umbilical cord had gotten stuck between her body and the birth canal wall.
The babies were born one minute apart on Sept. 10 — the day Hurricane Irma hit Florida. (Their mobile home had no damage, but a home three doors down was half gone.)
Emma was intubated to help her breathe. She and brother, Eli, who had some minor breathing issues as a premature baby, were sent to Children’s.
Their father, Jake, came up to meet his twins a week later and to bring Amanda’s four children and the Chihuahuas home to Florida.
The family thought Amanda, the twins and grandma Kim would be following in a few weeks.
Amanda has been home to Florida once since the September birth of the twins. She went home in mid-October for about 10 days. When she and Jake returned to Akron to see Emma, they received bad news from Kim, who had stayed behind with the babies in the hospital.
Deathly white
Emma had to be put on a breathing machine that morning and had a blood infection. The doctors were doing tests to see if she had meningitis.
“She said Emma was hanging by a thread and it was life or death,” Amanda recalled. As soon as the couple landed in Akron, Kim told them that Emma had bacterial meningitis. When Amanda arrived at the hospital, “I looked at my husband and said, ‘That’s not my daughter.’ She was deathly white. I said, ‘She looks dead.’
“Clearly that was not what my daughter looked like when I left,” Amanda said.
Emma had developed what is called late-onset meningitis from Group B Strep, said Dr. Shankar Upadhyayula, an infectious disease doctor at Children’s and one of many physicians on her complicated case.
Upadhyayula said unlike early onset meningitis, which can show up in the first week after birth and is usually contracted from a mother with Group B Strep who has not been treated with antibiotics before the birth, it is unknown why late-onset meningitis develops, usually a month or so after birth.
After several weeks of up and down news, including feeding and stomach issues, Emma finally had surgery on Tuesday to place a permanent shunt to drain fluid from her brain to her stomach.
Her infection has cleared, Upadhyayula said.
“You almost feel like she’s a miracle baby, that’s what I told Mom,” he said. Though no one knows for sure what Emma’s prognosis is or complications that could follow, “there is no reason we should not be hopeful for a fair outcome,” he said.
The most common complication of bacterial meningitis is hearing loss, said Upadhyayula, and Emma recently failed a hearing test.
“It is also possible you can develop a loss of hearing right away and slowly it may improve,” he said. “Mom feels [Emma] can hear some, so that’s interesting.”
There is also a possibility of reinfection.
Long term, it is unknown if Emma could be delayed in her developmental milestones and neurological development. Once she gets to Florida, she will need to be under the care of neurologists.