Life for Emily Catherine Schneider has been a struggle since
before she was born.
But the St. Marys girl’s family hopes a new procedure will ease
that struggle.
Emily, who is now 7, was diagnosed with spina bifida while she
was still in the womb of her mother, Mary Jo Schneider.
Spina bifida is a disease in which part of the baby’s spinal
cord protrudes from a hole in the spinal column. The constant
leakage of spinal fluid through a lesion can lead to hydrocephalus,
or water on the brain. A baby could also be born with clubbed feet,
no bladder or bowel control and brain damage, according to
information on the Vanderbilt University Web site.
Mary Jo Schneider and her husband, Tim, feeling they should
spare no cost to improve Emily’s quality of life, chose to seek
fetal surgery for Emily instead of abortion or surgery after birth.
The surgery, however, could not restore neurological functions
already lost, according to the Vanderbilt University Web site.
After dealing with many doubts, Mary Jo Schneider went through
with the surgery to close the lesion on her baby’s lower back on
Nov. 4, 1999, in the Vanderbilt University Medical Center in
Tennessee.
During a routine check-up at Magee Women’s Hospital in
Pittsburgh, Emily was delivered by cesarean section the morning of
Jan. 27, 2000. She was immediately taken to Children’s Hospital in
Pittsburgh where surgeons worked to close the incision made in the
previous in utero surgery since it was slightly open again.
“She’s an amazing child,” Schneider said.
But now, Emily has to deal with bladder problems that developed
from the spina bifida and depends on help from her parents and
adults at school daily.
“She can’t really go to a friend’s house after school or sleep
over,” Mary Jo Schneider said. “It’s nothing major. We’ve dealt
with it.”
Even an amazing child needs help, and Emily has found another
amazing procedure to do just that.
An Associated Press article that appeared in The Era on Dec. 20,
2006, described doctors at William Beaumont Hospital in Royal Oak,
Mich., beginning an experiment to see if rerouting patients’ nerves
might fix the loss of bladder control. The operation involves
cutting open a spot on the spine and sewing an essentially dead
nerve from the bladder to an active nerve from the thigh with a
single hair-thin stitch.
The nerve, growing at a millimeter a day, will take a span of 6
to 18 months to grow back and then reactivate into a new nerve,
according to Mary Jo Schneider. If the procedure works, patients
can merely scratch the thigh to send a signal to the bladder.
Schneider learned about the article after her uncle read it and
she contacted doctors at the William Beaumont Hospital at the
beginning of January. They set up a preoperation and consultation
for Emily, which took place earlier this month. Emily had sensory
testing performed in order to target the active nerves.
The actual procedure will take place on April 3 at the hospital.
Dr. Chuan-Gao Xiao, who pioneered the technique in China, will be
assisting with the surgery as well as with eight others that week
at the hospital. Schneider said Emily will be the 5th in the United
States to have this procedure done.
“He really seems like a man that really wants to help people,”
Schneider said of Xiao.
Xiao also assisted with surgeries on both those paralyzed and
with spina bifida at Beaumont in December. Xiao said 110 spinal
cord injury patients and 230 with spina bifida have undergone the
procedure, reporting about an 80 percent success rate in China.
“If it could help even an ounce, I would be ecstatic,” Schneider
said of the surgery. “My concern is if it would take something away
that she already has, like her ability to walk or run. That’s more
important. If she was in danger of losing something, we wouldn’t
have done it.”
A team of doctors from Beaumont traveled to China in February
2005 to watch Xiao operate. They saw the results with the Chinese
people and now hope the U.S. study will reproduce the same
results.
“The people we met at Beaumont were just fantastic,” Schneider
said. “I can tell they’re sincere in trying to help people. I had a
lot of hospital experiences, but I never had one like that
before.”
Schneider said Emily will see doctors for follow-ups at least
five times over 18 months after the surgery.
“I guess because I didn’t feel (as if there was) a lot of follow
up with the fetal surgery … to me, I feel more comfortable (with
this procedure),” Schneider said. “There’s close contact on
it.”
But Schneider said she’s still slightly afraid.
“It’s scary anytime you have to go under anesthetic or when you
go near the spinal cord,” Schneider said. “There’s always those
risks involved, and she’s my baby. I wouldn’t do anything to hurt
her. But hopefully this will impact her quality of life so she can
hang out with friends.”
Schneider said since all of the surgery costs are covered under
a personal grant funding the study, they only have to worry about
the costs of travel with her family staying at her cousin’s house
just four miles from the hospital.
Emily will spend about four days in the hospital after the
surgery, and a follow-up is necessary seven to 14 days later.
Schneider said Emily will be missing about a week of school, but
the surgery and follow-up takes place at a time the family had a
previous vacation planned during the school’s “spring break.”
Schneider said the surgery will not end all of Emily’s problems,
however. She said Emily still has a chance of developing scoliosis
later in life.
“I just want people to be aware of (this new procedure), just to
bring attention to it in case it can help anyone else too,”
Schneider said. “You’d be surprised how many people are going
through the same thing she does.”
