Surgery performed on a fetus in the womb to repair defects from spina bifida triggers the body's ability to restore normal brain structure, new research has discovered.
Will this new surgery soon become the standard treatment for spina bifida? Chmait feels certain it will.
And while the outcomes of fetal surgery aren't always as good as doctors hope, sometimes the results are truly amazing.
Austin, a pediatric surgeon, helps counsel couples through that agonizing decision. She walks them through the potential risks and benefits. She describes each step in the hours-long surgery, from slicing open the uterus to closing the gap around the spinal cord with tiny stitches through developing fetal tissue so fragile, it’s almost “like tissue paper,” she said, vulnerable to tearing.
What she doesn’t tell them: She herself has spina bifida.
Usually, we remove the baby from the uterus, operate, then put it back. But you can't always do that. For example, spina bifida, a defect where bone and flesh don't fully cover the spinal cord, requires intervention at around 22 to 25 weeks of gestation. If we make a large cut in the uterus at that time, when the fetus weighs less than a pound, the organ could tear as the baby grows, endangering mother and child.
Children born with spina bifida can have severe paralysis and a lifetime of other health problems.
The condition tends to affect Hispanic children more than others.
Operating rooms are usually kept cool, almost chilly. But not for fetal surgery. If the temperature is too low, the fetus’s heartbeat can slow down too much, so this operating room was pretty hot. When the photographer, Béatrice de Géa, and I were changing into scrubs in the women’s locker room, a nurse warned, “It’s going to be like a sauna in there.”
Whenever I’m asked about how I got started in advocacy for the spina bifida cause, I pause, and cringe a bit. It really is a long story, and the average person’s attention span has wandered long before I’m done telling it. Here’s the short version of it:
Spina bifida is generally not fatal, so the standard practice was to operate after birth. But the results of postnatal surgery were mixed: most children could not walk and had other problems. Doctors began to suspect that outcomes might be better if they could fix the defect before birth. Some of the spinal damage is caused by amniotic fluid, which turns increasingly toxic to the exposed nerve tissue as the pregnancy progresses and the fetus passes more and more wastes into the fluid.
You’ve just been told by your doctor that your baby has spina bifida. Between the tears you’re fighting back and the questions running through your mind, you’re probably scratching your head in confusion about all of this “spina-something” business.
Spina bifida. Myelomeningocele. A neural tube defect in which the spinal column fails to close completely within the first 28 days of fetal development.
Faces of Spina Bifida is an online magazine, a place to celebrate diversity among people living with Spina Bifida. It’s an online community where people chronicle their lives, are inspired, and make connections.
SBRN is a source of support and information, and provides opportunities for the Spina Bifida Community to connect on a personal level.
The mission of IF is to improve the quality of life of people with Spina Bifida and Hydrocephalus throughout the world and to decrease the prevalence of Spina Bifida and Hydrocephalus by primary prevention. In its work, IF is focusing in four main domains; Prevention, International Solidarity, Human Rights and Knowledge Transfer. Besides, IF is actively advocating for the rights of people with Spina Bifida and Hydrocephalus and conducting a variety of projects in Europe and in developing counties.
The Sophie's Voice Foundation is a charitable organization supporting family outreach programs, prenatal education and surgical studies for children and adults with Spina Bifida.
The Spina Bifida Association serves adults and children who live with the challenges of Spina Bifida.
We are the Spina Bifida Family Network. Among the many things our families have in common is a child who was born with Spina Bifida. Our children are gifted in many ways, yet also face medical challenges throughout their lives. For some, Spina Bifida's impact can be minimal. For others, it can be quite complicated. The SBFN was formed to help families deal with these diversities.
We are here to assist families in providing on-going emotional support, provide practical information and education to families that are raising a child or children with spina bifida. We as parents can utilize our experiences to benefit other families and we can also individually learn how we can better assist our children in their daily lives and prepare them for the future.
The SBF, a not-for-profit organisation was formed by Medical Professionals and parents of Spina Bifida Children who have been involved in the care and upbringing of Spina Bifida patients in India for more than a decade. Since 1997, we have been consistently working for the cause of improving the lives of Spina Bifida patients and for preventing SB.
Spina Bifida HQ is a hub for all your educational needs. Whether you are just looking for more information, or needing insight on a specific topic, we want to make your life easier.
I'm a 30 something women with spina bifida living in New England with my husband, 2 cats and young daughter. I write about being a mom with a physical disability raising my healthy daughter.
Spina Bifida is a neural tube defect that affects approximately 3,000 pregnancies each year. Although the occurrences appear to be decreasing, Spina Bifida occurs in approximately seven of out every 10,000 live births in the United States.
In depth information on signs, diagnosis and treatment of spina bifida.
Spina bifida is a major birth defect of a person’s spine. With good quality medical care people with spina bifida can reach their full potential. If you have spina bifida, or know someone who does, it’s important to get the facts so that you can make the best possible health care choices.
Information, fact sheet and resources for spina bifida.
Information, research, clinical trials and resources for spina bifida.