Barb
10-19-2007, 03:37 PM
COLORADO SPRINGS, Colo.--When Christina Coffey was told her unborn child had spina bifida, she did what many people do when they have questions: She turned to the Internet.
What she found was more than support groups and informational Web sites. Coffey, 29, discovered a medical study seeking women like her to undergo a rare surgery.
The procedure called for the uterus to be removed, the fetus operated on, and everything to be put back in place until birth weeks later. Doctors wanted to know if fetal surgery prevented some of the crippling outcomes of the spinal birth defect. Coffey called.
Today, she and her husband have a 9-week-old daughter with none of the obvious impairments of babies born with the neural birth defect. Kaylee Grace Coffey, so far, kicks her legs and shows normal reflex responses.
Spina bifida occurs when the spinal column fails to completely close during the first month of pregnancy, according to the Spina Bifida Association.
After Coffey's 19-week ulstrasound, a specialist confirmed the Coffeys' unborn daughter had myelomeningocele spina bifida, in which the nerve fibers and protective coverings come through the spinal opening and are exposed. In its most severe form, the defect results in nerve damage between the brain and lower back. Their daughter's opening was in the lower back.
The spinal opening could be fixed after birth, the Coffeys were told, but by then permanent loss of bladder control or paralysis might have occurred.
Christina got on her computer to learn more about their new reality. That's when she found the Management of Myelomeningocele Study sponsored by the National Institute of Child Health and Human Development.
Doctors from The Children's Hospital of Philadelphia, the University of California at San Francisco and Vanderbilt University Medical Center in Nashville were seeking 200 women. Half would receive fetal surgery, half the traditional surgery a few days after birth. They would be randomly chosen for one type of surgery or the other, and then followed for 21/2 years or longer.
Christina called and researchers immediately took interest in her case. For two days, Christina endured a flurry of tests and interviews. On the third day, she was asked one last time if she'd like to proceed. When she agreed, her name was fed into the computer. Dubbed No. 118 in the study, which began in 2003, her surgery would be the next day.
The procedure took two hours and went smoothly, she said. The Coffeys were told later that there was cheering in the operating room when it was done.
Their daughter was born at 32 weeks, the scar on her back a reminder that this was not her first encounter with human hands. In her first weeks, she was tested at Children's Hospital in Denver for possible disabilities, none of which have shown up. Only time will tell if Kaylee has developmental delays or other complications.
Date published: 10/7/2007
By BRIAN NEWSOMEThe Gazette
What she found was more than support groups and informational Web sites. Coffey, 29, discovered a medical study seeking women like her to undergo a rare surgery.
The procedure called for the uterus to be removed, the fetus operated on, and everything to be put back in place until birth weeks later. Doctors wanted to know if fetal surgery prevented some of the crippling outcomes of the spinal birth defect. Coffey called.
Today, she and her husband have a 9-week-old daughter with none of the obvious impairments of babies born with the neural birth defect. Kaylee Grace Coffey, so far, kicks her legs and shows normal reflex responses.
Spina bifida occurs when the spinal column fails to completely close during the first month of pregnancy, according to the Spina Bifida Association.
After Coffey's 19-week ulstrasound, a specialist confirmed the Coffeys' unborn daughter had myelomeningocele spina bifida, in which the nerve fibers and protective coverings come through the spinal opening and are exposed. In its most severe form, the defect results in nerve damage between the brain and lower back. Their daughter's opening was in the lower back.
The spinal opening could be fixed after birth, the Coffeys were told, but by then permanent loss of bladder control or paralysis might have occurred.
Christina got on her computer to learn more about their new reality. That's when she found the Management of Myelomeningocele Study sponsored by the National Institute of Child Health and Human Development.
Doctors from The Children's Hospital of Philadelphia, the University of California at San Francisco and Vanderbilt University Medical Center in Nashville were seeking 200 women. Half would receive fetal surgery, half the traditional surgery a few days after birth. They would be randomly chosen for one type of surgery or the other, and then followed for 21/2 years or longer.
Christina called and researchers immediately took interest in her case. For two days, Christina endured a flurry of tests and interviews. On the third day, she was asked one last time if she'd like to proceed. When she agreed, her name was fed into the computer. Dubbed No. 118 in the study, which began in 2003, her surgery would be the next day.
The procedure took two hours and went smoothly, she said. The Coffeys were told later that there was cheering in the operating room when it was done.
Their daughter was born at 32 weeks, the scar on her back a reminder that this was not her first encounter with human hands. In her first weeks, she was tested at Children's Hospital in Denver for possible disabilities, none of which have shown up. Only time will tell if Kaylee has developmental delays or other complications.
Date published: 10/7/2007
By BRIAN NEWSOMEThe Gazette