NEW MIDDLETOWN Spina bifida baby gets good prognosis after fetal surgery and an early birth

Her parents say they don't regret her fetal surgery despite the risk of prematurity.
NEW MIDDLETOWN -- Nicole Eva Barber is a fighter -- all 30 ounces of her.
She kicks her feet vigorously. Because she is on a ventilator and not able to cry, she grimaces when blood is drawn from a heel she's not supposed to be able to feel.
Nicole, the daughter of Dan and Lorie Barber of New Middletown, was born at 7:21 a.m. Feb. 5 at Forum Health Northside Medical Center after only about 25 weeks in the womb. Her original due date was May 19.
At birth, Nicole, who has spina bifida, weighed 1 pound 11 ounces and was 131/4 inches long. She has big feet and long fingers and a good head of hair, her mother said. Her eyes, fused shut for the first week of her life, are now open, but it's hard to tell what color they are, Barber said.
Feb. 5 was not Nicole's first hospital visit, however.
Less than two weeks before her birth, Nicole had rare fetal surgery at Vanderbilt Hospital in Tennessee to repair her spine's protective covering.
The disorder: Spina bifida is a congenital condition in which part of the spinal cord protrudes through an opening in the spinal column.
Hydrocephalus, or water on the brain, can occur and can cause neurological problems ranging from paralysis to incontinence to developmental and learning disabilities.
It was water on the brain, and the accompanying brain operations to install shunts, that Lorie and Dan hoped to avoid with fetal surgery. Also, doctors think most of the damage from spina bifida occurs later in the pregnancy, and the sooner the spinal cord is protected, the better.
Although it is still very early, it looks as though that objective of avoiding water on the brain may have been achieved. Lorie said there is no brain bleeding, which doctors say is critical the first few weeks, and there is no water on the brain as of yet.
Risk: One of the risks associated with the fetal surgery is that it might trigger labor contractions and lead to premature birth.
Even though Lorie was taking medication to prevent contractions, on Feb. 3, her water broke. Two days later, Nicole was born.
Despite that setback, Lorie said she doesn't regret the decision to have the surgery. Nicole might have been born premature in any event, she said. "I'd do it again in a second."
Lorie, who is recovering from two Caesarean section operations (one for the fetal surgery and one to have the baby) within a two-week period, said she is doing well physically. But emotionally, it is another matter.
"It's very difficult to not have the baby home. She belongs with me, but she has to be there," Lorie said.
She said she and Dan were warned by doctors that the process is "two steps forward, one step back," and so far, that's been correct. Little things take on great importance.
"I'll be so excited when she reaches 2 pounds," Lorie continued.
Lorie is able to see the baby but has only been able to hold her once for about three minutes. Dan, who works at Northside, is able to see Nicole often at Forum Health Tod Children's Hospital.
Outcome? The Barbers know it will be a couple of years before they know the extent of Nicole's disabilities caused by spina bifida. So far, however, the news has been encouraging.
Doctors say Nicole may not have feeling in her heels, ankles, toes and the back of her legs, but she should be able to walk with assistance.
The spina bifida lesion was small and low on her spine, which is good news, the Barbers added.
Lorie said they hope to bring Nicole home in mid-May, about the time she was expected to be born.
"We're going to have a huge party this summer after she gets home," she added.

Don't Miss a Story

Sign up for our newsletter to receive daily news directly in your inbox.