Zoe Lovell happily banged two plastic cups together as Julie Thornton, an occupational therapist at The Medical Center, clapped her own hands and said, “Bang, bang, bang, bang, bang.”
The year-old Morgantown toddler later cried in frustration when Thornton held toy keys slightly out of her grasp in hopes that Zoe would reach further to grab them.
“Yay for Zoe!” Thornton cheered whenever Zoe got the keys. “Good girl!”
Zoe was receiving occupational therapy Wednesday for visual motor and fine motor skill delays she has because of spina bifida.
According to the Centers for Disease Control and Prevention website at www.cdc.gov, spina bifida is a type of neural tube defect that affects the spine and is usually apparent at birth. The condition can happen anywhere along the spine if the neural tube doesn’t close all the way. It can cause physical and mental disabilities that range from mild to severe, depending on the size and location of the opening in the spine and whether part of the spinal cord and nerves are affected.
Thornton, who has been working with Zoe for about 10 months, said she was helping Zoe with a variety of things, such as grasping objects with her thumb and index finger and crossing her midsection from one hand to the other instead of reaching out for things with both hands.
“She’s progressing well,” Thornton said. “I was seeing her once a week. Now I’m seeing her every other week.”
John and Hillary Lovell, Zoe’s parents, tried for a long time to get pregnant with their first child, Faith, now 2.
“It was a very uneventful pregnancy,” she said.
The couple didn’t expect a second pregnancy to happen quickly. They were surprised when one month after they started trying for a second child, Hillary Lovell was pregnant. This pregnancy wasn’t uneventful, though. When she was 17 weeks pregnant, the couple went in for a routine ultrasound.
“I thought we would find out if we were having a little boy or a little girl,” John Lovell said.
Instead, the couple were referred to a specialist, who told them their baby had spina bifida. “We were heartbroken, but we’re thankful we got to be prepared for that,” John Lovell said. “We got more comfortable with it over time.”
The couple started going to see a specialist in Nashville every month to check on Zoe’s progress. Toward the end of the pregnancy, Hillary Lovell was being seen three times each week. She went to the hospital for a scheduled cesarean section. Zoe had surgery the day after her birth, Hillary Lovell said.
“We were in the (neonatal intensive care unit) after her birth,” she said. “There was an opening in her back. They had to go in and close that.”
Zoe has a shunt because of hydrocephalus, a buildup of fluid in the skull that could lead to brain swelling. The hydrocephalus may have caused Zoe to be farsighted, Hillary Lovell said. On Wednesday, she peered at the world through pink glasses.
“We have baby glasses all over the house,” Hillary Lovell said, laughing.
The couple wanted Zoe to have the best life possible. Her name even expresses that desire.
“We chose to name her ‘Zoe’ because it’s the Greek word for ‘life’ – abundant life,” John Lovell said. “We want her not to just have a life, but an abundant life, that this world would not hinder her.”
Zoe has physical therapy each week and occupational therapy every two weeks at The Medical Center. First Steps, a statewide early intervention system that helps children from birth to age 3 who have developmental delays, helps Zoe at the family’s home. Zoe also visits the Spina Bifida Clinic at Monroe Carell Jr. Children’s Hospital at Vanderbilt, where she sees a neurosurgeon, orthopedist, urologist, physical therapist, occupational therapist and dietitian.
“All the doctors you need come to you,” John Lovell said. “I counted six doctors on one visit. We go once every three months.”
Zoe’s opening was low on her back. She can move everything down to her toes, Hillary Lovell said.
“She’s just weaker,” she said. “She has gross motor delays. They’re on their own timetable.”
She may also have bowel and bladder issues to some degree, John Lovell said.
“How that plays out is such a wide range,” he said.
Zoe has been a joy for the couple. They laughed as Zoe smiled and babbled.
“She has a personality,” Hillary Lovell said.
The Lovells want people to know about spina bifida and encourage women of childbearing age to take a daily multivitamin with folic acid, because it may reduce the risk of spina bifida. They also want people to know that having a child with spina bifida is “not the end of the world.”
“The doctor will try to tell you you won’t have a good life, but you definitely do,” said Hillary Lovell, gazing at her smiling daughter sitting in her lap. “You manage it and move on. It’s not nearly as scary as I anticipated. You educate yourself.”
“And be patient,” John Lovell added.
