Spina Bifida Research Paper
May 8, 2013
Risks and Rewards of Prenatal Surgery for Spina Bifida
New advances in surgery are allowing prenatal repair (in utero). Are the results worth the risks involved for both the mother and unborn child? For me, I believe the answer would be yes. I would be willing to risk anything to give my child a chance at a normal, healthy life. I believe all children deserve that chance.
A friend of mine has a daughter that is 22 weeks pregnant. She recently found out that her unborn son has spina bifida. She was told about a study at Vanderbilt for prenatal repair of spina bifida. Without this surgery her son would be born paralyzed. She has decided that the benefits are worth the risk and has been accepted into the study. She will have …show more content…
to live in Nashville for the remainder of her pregnancy to be near the doctors and hospital in case of any complications. I never knew surgeries like this were possible and am amazed and excited about this new technology. Hopefully one day all birth defects will be curable.
Spina bifida, which literally means “cleft spine,” is characterized by the incomplete development of the brain, spinal cord, and/or meninges (the protective covering around the brain and spinal cord). It is the most common neural tube defect in the United States—affecting 1,500 to 2,000 of the more than 4 million babies born in the country each year. There are an estimated 166,000 individuals with spina bifida living in the United States. ("National institute of," 2012)
There are four types of spina bifida: occulta, closed neural tube defects, meningocele, and myelomeningocele.
Occulta is the mildest and most common form in which one or more vertebrae are malformed. The name “occulta,” which means “hidden,” indicates that the malformation, or opening in the spine, is covered by a layer of skin. This form of spina bifida, present in 10 to 20 percent of the general population, rarely causes disability or symptoms.
Closed neural tube defects make up the second type of spina bifida. This form consists of a diverse group of spinal defects in which the spinal cord is marked by a malformation of fat, bone, or membranes. In some individuals there are few or no symptoms; in others the malformation causes partial paralysis with urinary and bowel dysfunction.
In the third type, meningocele, spinal fluid and the meninges protrude through an abnormal vertebral opening; the malformation contains no neural elements and may or may not be covered by a layer of skin. Some individuals with meningocele may have few or no symptoms while others may experience symptoms similar to closed neural tube defects.
Myelomeningocele, the fourth form, is the most severe and occurs when the spinal cord/neural elements are exposed through the opening in the spine, resulting in partial or complete motor paralysis and sensory deficits within the parts of the body below the spinal opening. The paralysis may be so severe that the affected individual is unable to walk and may have urinary and bowel dysfunction. ("National institute of," 2012)
A landmark study, co-led by experts at Vanderbilt University Medical Center, proves that babies who have surgery to repair spina bifida while still in the womb have better outcomes than babies who have surgery after birth. The positive outcomes include a decreased risk of death or need for shunt placement in the brain by the age of 12 months, plus improved mental and motor function. (Carrel Jr., 2012)
Members of the fetal surgery team at Vanderbilt pioneered the innovative surgical procedure to repair myelomeningocele, the most serious form of spina bifida. Surgeons at Vanderbilt performed the first-ever in utero repair for myelomeningocele in 1997 on Corey Meyer and her unborn son Daniel. Since those early procedures, Noel Tulipan, M.D., internationally renowned neurosurgeon and director of pediatric neurosurgery, has performed more than 200 prenatal surgeries to repair the spina bifida defect. (Carrel Jr., 2012)
Vanderbilt University Medical Center is one of only three centers in the U.S. who participated in the National Institutes of Health (NIH) funded Management of Myelomeningocele Study (MOMS), a clinical trial comparing the two methods of treatment for babies with spina bifida; fetal surgery before birth and surgical closure after birth. The results of the seven-year study show that repairing the fetal defect, typically between 19 and 26 weeks of gestation, improves the health of children with spina bifida. (Carrel Jr., 2012)
There was a seven year study done on the surgery and its benefits and the results are amazing. The surgery is not considered a cure, but an improvement of life quality. The surgery involves risk for the unborn child, as well as the mother. Each individual would need to seriously ask themselves if the risk is worth the result. For me, I believe the answer would be yes. Any risk would be worth giving my child a chance at a healthy, normal life. Between 1,400 and 1,500 babies are born with spina bifida, which is a birth defect in which an area of the spinal column doesn’t form properly, leaving a section of the spinal cord and spinal nerves exposed through an opening in the back, in the U.S. each year. Infants born with this birth defect have a mortality rate of approximately 10 percent. Studies have shown that prenatal spina bifida repair has significant benefits to the babies. (“The Children’s Hospital of Philadelphia”) Specifically, the study found that prenatal repair resulted in:
Reversal of the hindbrain herniation component of the Chiari II malformation
Reduced need for ventricular shunting (a procedure in which a thin tube is introduced into the brain’s ventricles to drain fluid and relieve hydrocephalus)
Reduced incidence or severity of potentially devastating neurologic effects caused by the spine’s exposure to amniotic fluid, such as impaired motor function Prenatal repair is a complex and challenging procedure, requiring the most expert, comprehensive care for both mother and fetus.
As with other birth defects, most myelomeningoceles are discovered by routine ultrasound evaluation between 16 and 18 weeks into the pregnancy. Sometimes, a blood test known as maternal serum alpha fetoprotein (AFP) is also positive, triggering the ultrasound. Sonographic features suggestive of myelomeningocele include a cystic mass anywhere on the spine. If no skin covers the defect, alpha fetoprotein levels in the blood and amniotic fluid will be elevated and support the diagnosis. (“The Children’s Hospital of …show more content…
Philadelphia”)
Mothers referred for prenatal repair of spina bifida undergo a comprehensive, one-day evaluation that includes:
High-resolution level II ultrasound — to confirm location of the defect and to assess for any other birth defects
Ultrafast fetal MRI — to confirm presence of the Chiari II malformation and to screen for evidence of any other neurologic abnormalities
Fetal echocardiogram – to determine any problems with the heart
After evaluation, mothers will meet with a multidisciplinary team, including a fetal surgeon, a neurosurgeon, an anesthesiologist, a maternal-fetal medicine specialist and a coordinator. The purpose of this meeting is to review your test results, confirm the diagnosis, explain spina bifida treatment options and potential outcomes, and answer all of your questions. (“The Children’s Hospital of Philadelphia”)
The decision of whether prenatal spina bifida treatment is appropriate is influenced by several considerations, including gestational age, the level of the myelomeningocele lesion on the spine, presence of the Chiari II malformation, and a number of important maternal health factors. Prenatal repair also requires a significant commitment on the part of the mother and her support person. The team helps each family fully understand the benefits and risks of spina bifida treatment so they can make the best decision for their unique situation. (“The Children’s Hospital of Philadelphia”)
If a mother whose fetus has a myelomeningocele is a candidate for prenatal spina bifida treatment, the surgery is performed between 19 and 25 weeks’ gestation. The doctors require that the mother stay in the town, along with a support person, where the surgery is being performed for the surgery and for the duration of the pregnancy to allow close monitoring. (“The Children’s Hospital of Philadelphia”)
In prenatal repair, the mother undergoes general anesthesia, which also relaxes the uterus and anesthetizes the fetus.
Fetal surgeons perform a laparotomy (an incision across the mother’s abdomen), the uterus is opened and the baby’s back is rotated into view. A pediatric neurosurgeon removes the MMC sac, if one is present, and closes skin over the defect to protect the spinal cord from exposure to the amniotic fluid. The uterus and the abdominal incision are then closed. A maternal-fetal medicine specialist performs sterile intraoperative ultrasound to map the position of the placenta and the fetus, and a fetal cardiologist uses echocardiography (ultrasound to assess the fetal heart) to examine fetal heart function during the surgery. These measures are used to ensure the utmost maternal and fetal safety. (“The Children’s Hospital of
Philadelphia”)
The mother usually remains in the hospital for three to five days after the prenatal spina bifida treatment and is on modified bed rest for an additional two weeks once released from the hospital to reduce the risk of preterm labor. For the remainder of the pregnancy, follow-up includes weekly visits to the hospital for ultrasound monitoring and routine prenatal care. The baby is delivered by planned cesarean section at 37 weeks, if labor does not begin sooner. (“The Children’s Hospital of Philadelphia”)
Mothers who choose prenatal spina bifida treatment will also be asked to sign a consent for postnatal follow-up of the baby by the facility performing the surgery. This follow-up will require the family to return to the facility for evaluation when the child reaches 12 months, 30 months and 5 years of age. Detailed follow-up not only provides excellent care for the child, it adds to a growing base of knowledge that will benefit future generations of children with spina bifida. (“The Children’s Hospital of Philadelphia”)
References
"The Children 's Hospital of Philadelphia." Center for Fetal Diagnosis and Treatment. N.p., n.d. Web. 8 May 2013. .
Center for fetal diagnosis and treatment. (2012, September). Retrieved from http://www.chop.edu/service/fetal-diagnosis-and-treatment/fetal-diagnoses/spina-bifida.html
Carrel Jr., M. (2012, November 13). Fetal surgery for repair of spina bifida. Retrieved from http://www.childrenshospital.vanderbilt.org/interior.php?mid=8205
National institute of neurological disorders and stroke. (2012, October 25). Retrieved from http://www.ninds.nih.gov/disorders/spina_bifida/detail_spina_bifida.htm
Risks and Rewards of Prenatal Surgery for Spina Bifida
New advances in surgery are allowing prenatal repair (in utero). Are the results worth the risks involved for both the mother and unborn child? For me, I believe the answer would be yes. I would be willing to risk anything to give my child a chance at a normal, healthy life. I believe all children deserve that chance.
A friend of mine has a daughter that is 22 weeks pregnant. She recently found out that her unborn son has spina bifida. She was told about a study at Vanderbilt for prenatal repair of spina bifida. Without this surgery her son would be born paralyzed. She has decided that the benefits are worth the risk and has been accepted into the study. She will have …show more content…
to live in Nashville for the remainder of her pregnancy to be near the doctors and hospital in case of any complications. I never knew surgeries like this were possible and am amazed and excited about this new technology. Hopefully one day all birth defects will be curable.
Spina bifida, which literally means “cleft spine,” is characterized by the incomplete development of the brain, spinal cord, and/or meninges (the protective covering around the brain and spinal cord). It is the most common neural tube defect in the United States—affecting 1,500 to 2,000 of the more than 4 million babies born in the country each year. There are an estimated 166,000 individuals with spina bifida living in the United States. ("National institute of," 2012)
There are four types of spina bifida: occulta, closed neural tube defects, meningocele, and myelomeningocele.
Occulta is the mildest and most common form in which one or more vertebrae are malformed. The name “occulta,” which means “hidden,” indicates that the malformation, or opening in the spine, is covered by a layer of skin. This form of spina bifida, present in 10 to 20 percent of the general population, rarely causes disability or symptoms.
Closed neural tube defects make up the second type of spina bifida. This form consists of a diverse group of spinal defects in which the spinal cord is marked by a malformation of fat, bone, or membranes. In some individuals there are few or no symptoms; in others the malformation causes partial paralysis with urinary and bowel dysfunction.
In the third type, meningocele, spinal fluid and the meninges protrude through an abnormal vertebral opening; the malformation contains no neural elements and may or may not be covered by a layer of skin. Some individuals with meningocele may have few or no symptoms while others may experience symptoms similar to closed neural tube defects.
Myelomeningocele, the fourth form, is the most severe and occurs when the spinal cord/neural elements are exposed through the opening in the spine, resulting in partial or complete motor paralysis and sensory deficits within the parts of the body below the spinal opening. The paralysis may be so severe that the affected individual is unable to walk and may have urinary and bowel dysfunction. ("National institute of," 2012)
A landmark study, co-led by experts at Vanderbilt University Medical Center, proves that babies who have surgery to repair spina bifida while still in the womb have better outcomes than babies who have surgery after birth. The positive outcomes include a decreased risk of death or need for shunt placement in the brain by the age of 12 months, plus improved mental and motor function. (Carrel Jr., 2012)
Members of the fetal surgery team at Vanderbilt pioneered the innovative surgical procedure to repair myelomeningocele, the most serious form of spina bifida. Surgeons at Vanderbilt performed the first-ever in utero repair for myelomeningocele in 1997 on Corey Meyer and her unborn son Daniel. Since those early procedures, Noel Tulipan, M.D., internationally renowned neurosurgeon and director of pediatric neurosurgery, has performed more than 200 prenatal surgeries to repair the spina bifida defect. (Carrel Jr., 2012)
Vanderbilt University Medical Center is one of only three centers in the U.S. who participated in the National Institutes of Health (NIH) funded Management of Myelomeningocele Study (MOMS), a clinical trial comparing the two methods of treatment for babies with spina bifida; fetal surgery before birth and surgical closure after birth. The results of the seven-year study show that repairing the fetal defect, typically between 19 and 26 weeks of gestation, improves the health of children with spina bifida. (Carrel Jr., 2012)
There was a seven year study done on the surgery and its benefits and the results are amazing. The surgery is not considered a cure, but an improvement of life quality. The surgery involves risk for the unborn child, as well as the mother. Each individual would need to seriously ask themselves if the risk is worth the result. For me, I believe the answer would be yes. Any risk would be worth giving my child a chance at a healthy, normal life. Between 1,400 and 1,500 babies are born with spina bifida, which is a birth defect in which an area of the spinal column doesn’t form properly, leaving a section of the spinal cord and spinal nerves exposed through an opening in the back, in the U.S. each year. Infants born with this birth defect have a mortality rate of approximately 10 percent. Studies have shown that prenatal spina bifida repair has significant benefits to the babies. (“The Children’s Hospital of Philadelphia”) Specifically, the study found that prenatal repair resulted in:
Reversal of the hindbrain herniation component of the Chiari II malformation
Reduced need for ventricular shunting (a procedure in which a thin tube is introduced into the brain’s ventricles to drain fluid and relieve hydrocephalus)
Reduced incidence or severity of potentially devastating neurologic effects caused by the spine’s exposure to amniotic fluid, such as impaired motor function Prenatal repair is a complex and challenging procedure, requiring the most expert, comprehensive care for both mother and fetus.
As with other birth defects, most myelomeningoceles are discovered by routine ultrasound evaluation between 16 and 18 weeks into the pregnancy. Sometimes, a blood test known as maternal serum alpha fetoprotein (AFP) is also positive, triggering the ultrasound. Sonographic features suggestive of myelomeningocele include a cystic mass anywhere on the spine. If no skin covers the defect, alpha fetoprotein levels in the blood and amniotic fluid will be elevated and support the diagnosis. (“The Children’s Hospital of …show more content…
Philadelphia”)
Mothers referred for prenatal repair of spina bifida undergo a comprehensive, one-day evaluation that includes:
High-resolution level II ultrasound — to confirm location of the defect and to assess for any other birth defects
Ultrafast fetal MRI — to confirm presence of the Chiari II malformation and to screen for evidence of any other neurologic abnormalities
Fetal echocardiogram – to determine any problems with the heart
After evaluation, mothers will meet with a multidisciplinary team, including a fetal surgeon, a neurosurgeon, an anesthesiologist, a maternal-fetal medicine specialist and a coordinator. The purpose of this meeting is to review your test results, confirm the diagnosis, explain spina bifida treatment options and potential outcomes, and answer all of your questions. (“The Children’s Hospital of Philadelphia”)
The decision of whether prenatal spina bifida treatment is appropriate is influenced by several considerations, including gestational age, the level of the myelomeningocele lesion on the spine, presence of the Chiari II malformation, and a number of important maternal health factors. Prenatal repair also requires a significant commitment on the part of the mother and her support person. The team helps each family fully understand the benefits and risks of spina bifida treatment so they can make the best decision for their unique situation. (“The Children’s Hospital of Philadelphia”)
If a mother whose fetus has a myelomeningocele is a candidate for prenatal spina bifida treatment, the surgery is performed between 19 and 25 weeks’ gestation. The doctors require that the mother stay in the town, along with a support person, where the surgery is being performed for the surgery and for the duration of the pregnancy to allow close monitoring. (“The Children’s Hospital of Philadelphia”)
In prenatal repair, the mother undergoes general anesthesia, which also relaxes the uterus and anesthetizes the fetus.
Fetal surgeons perform a laparotomy (an incision across the mother’s abdomen), the uterus is opened and the baby’s back is rotated into view. A pediatric neurosurgeon removes the MMC sac, if one is present, and closes skin over the defect to protect the spinal cord from exposure to the amniotic fluid. The uterus and the abdominal incision are then closed. A maternal-fetal medicine specialist performs sterile intraoperative ultrasound to map the position of the placenta and the fetus, and a fetal cardiologist uses echocardiography (ultrasound to assess the fetal heart) to examine fetal heart function during the surgery. These measures are used to ensure the utmost maternal and fetal safety. (“The Children’s Hospital of
Philadelphia”)
The mother usually remains in the hospital for three to five days after the prenatal spina bifida treatment and is on modified bed rest for an additional two weeks once released from the hospital to reduce the risk of preterm labor. For the remainder of the pregnancy, follow-up includes weekly visits to the hospital for ultrasound monitoring and routine prenatal care. The baby is delivered by planned cesarean section at 37 weeks, if labor does not begin sooner. (“The Children’s Hospital of Philadelphia”)
Mothers who choose prenatal spina bifida treatment will also be asked to sign a consent for postnatal follow-up of the baby by the facility performing the surgery. This follow-up will require the family to return to the facility for evaluation when the child reaches 12 months, 30 months and 5 years of age. Detailed follow-up not only provides excellent care for the child, it adds to a growing base of knowledge that will benefit future generations of children with spina bifida. (“The Children’s Hospital of Philadelphia”)
References
"The Children 's Hospital of Philadelphia." Center for Fetal Diagnosis and Treatment. N.p., n.d. Web. 8 May 2013. .
Center for fetal diagnosis and treatment. (2012, September). Retrieved from http://www.chop.edu/service/fetal-diagnosis-and-treatment/fetal-diagnoses/spina-bifida.html
Carrel Jr., M. (2012, November 13). Fetal surgery for repair of spina bifida. Retrieved from http://www.childrenshospital.vanderbilt.org/interior.php?mid=8205
National institute of neurological disorders and stroke. (2012, October 25). Retrieved from http://www.ninds.nih.gov/disorders/spina_bifida/detail_spina_bifida.htm