Atención de la espina bífida en Mayo Clinic

Los expertos pediátricos de Mayo Clinic brindan atención médica de la más alta calidad a los niños que padecen espina bífida y otras complicaciones.

El equipo de atención de Mayo Clinic

En Mayo Clinic, puedes esperar la mejor atención médica de nuestro equipo multidisciplinario de expertos pediátricos en espina bífida. Según la edad y las necesidades individuales, el equipo de expertos podría comprender especialistas pediátricos o de adultos en neurocirugía, neurología, urología, cirugía ortopédica, radiología, medicina física y rehabilitación, rehabilitación pediátrica, genómica clínica y otras especialidades.

Cirugía de espina bífida antes del nacimiento

Cuando el diagnóstico de espina bífida se realiza antes del nacimiento, después de una evaluación completa, los expertos de Mayo Clinic pueden ofrecerle una cirugía de espina bífida en el útero a la mujer embarazada. Este procedimiento complejo incluye un equipo de varios especialistas de Mayo Clinic, como neurocirujanos pediátricos, especialistas en obstetricia y ginecología, y especialistas del Centro de Atención Médica Fetal.

Mediante el uso de una ecografía como guía, los cirujanos dejan expuesto el útero de la madre por vía quirúrgica, lo abren, reparan la médula espinal del bebé y cierran la incisión de la madre. Cuando la realizan especialistas expertos de Mayo Clinic, la cirugía prenatal normalmente genera una discapacidad significativamente menor para el niño con espina bífida.

Cirugía intrauterina para tratar la espina bífida

Mayo Clinic tiene pericia y experiencia considerables en la atención de niños y adultos que padecen espina bífida. Todos los años, más de 370 personas que tienen esta afección reciben tratamiento en Mayo Clinic.

Fetoscopic spina bifida repair

Narrator: During fetoscopic surgical repair, an incision is made in the abdomen to expose the uterus. Using ultrasound, the location of the placenta is identified to determine safe locations for insertion of the endoscopic trocars. The baby's back is then positioned facing up, and gas or air is added to the uterus to create a uterine environment that's half gas and half amniotic fluid. This allows the baby to float in the amniotic fluid with its back exposed for the procedure.

Two ports are inserted through the wall of the uterus. Through a tiny telescope, the spina bifida defect is visualized. The membrane of the cyst is sharply cut, and the neural placode is released from the surrounding tissue. Then the dura mater and all layers of the muscle and skin are closed over the top of the neural elements, resulting in a watertight seal. The gas is replaced by fluid to maintain the amniotic fluid volume. Finally, the instruments and ports are removed, and the maternal abdomen is closed to complete the procedure.

Fetoscopic surgery on fetus Spina bifida fetoscopic surgery

Fetal surgeons access the uterus through an incision in the mother's abdomen, repair the spina bifida defect and close the opening in the baby's back and the mother's incision.

Para ayudar a planificar y tomar decisiones sobre el tratamiento, se puede crear un modelo de la columna vertebral del paciente mediante pruebas de diagnóstico por imágenes en computadora y luego imprimirlo en una impresora tridimensional.

Clínica de Espina Bífida

En el campus de Mayo Clinic de Rochester, Minnesota, la Clínica de Espina Bífida coordina la atención médica de niños y adolescentes con trastornos complejos de la espina dorsal, la médula espinal, el cerebro, el intestino y la vejiga. Cuando alcanzan la edad adulta, pueden continuar con un equipo de atención médica de Mayo Clinic para adultos con espina bífida.

Es probable que tú y tu hijo vean a muchos expertos durante el transcurso de la primera consulta. Este enfoque de equipo multidisciplinario permite diseñar un plan de tratamiento personalizado y brindar atención médica centrada en el paciente. El plan podría comprender cirugía, medicamentos, terapia, equipamiento especial y consultas de seguimiento con especialistas.

Pericia y calificaciones

Constantemente, organizaciones externas reconocen a Mayo Clinic por brindar una excelente atención a los pacientes. Los reconocimientos de este tipo refuerzan nuestro compromiso de brindar una atención compasiva y experta tanto a niños como a adultos.

Pericia reconocida a nivel nacional

Mayo Clinic en Rochester, Minnesota, y Mayo Clinic en Jacksonville, Florida, se encuentran entre los mejores hospitales de neurología y neurocirugía en las clasificaciones de U.S. News & World Report Best Hospitals. Mayo Clinic en Phoenix/Scottsdale, Arizona, está clasificado como de alto rendimiento en neurología y neurocirugía por U.S. News & World Report. El Centro Pediátrico de Mayo Clinic ha sido nuevamente clasificado como uno de los mejores hospitales infantiles de Minnesota, Dakota e Iowa en la clasificación de los mejores hospitales infantiles 2019-2020 de U.S. News & World Report.

Mayo Clinic de Rochester, Minnesota y Mayo Clinic de Phoenix/Scottsdale, Arizona, ocupan los primeros puestos entre los mejores hospitales de ortopedia según la calificación de U.S. News & World Report. Mayo Clinic de Jacksonville, Florida, está calificado con el mejor desempeño en cuanto a ortopedia. Mayo Clinic también ocupa los primeros puestos entre los mejores hospitales de ortopedia infantil.

Mayo Clinic en Rochester, Minnesota, Mayo Clinic en Scottsdale, Arizona, y Mayo Clinic en Jacksonville, Florida, se encuentran entre los mejores hospitales de urología según U.S. News & World Report.

Expertos en pediatría

Los expertos pediátricos de Mayo Clinic brindan atención médica de la más alta calidad a los niños que padecen espina bífida y otras complicaciones. Este equipo multidisciplinario experimentado comprende especialistas en neurocirugía pediátrica, neurología pediátrica, urología pediátrica, cirugía ortopédica pediátrica, rehabilitación pediátrica y otras especializaciones.

Los niños que requieren atención médica en un hospital reciben tratamiento en el Mayo Eugenio Litta Children’s Hospital, constantemente reconocido como uno de los mejores hospitales de niños del país.

Centro de Atención Médica Fetal

Fetal Care Center (Centro de Cuidado Fetal) de Mayo Clinic utiliza un enfoque de equipo multidisciplinario coordinado para ayudar a las mujeres que presentan embarazos de alto riesgo. El personal de Fetal Care Center emplea técnicas de diagnóstico por imágenes para diagnosticar de forma precisa las anomalías congénitas, como la espina bífida, antes del nacimiento y así poner en contacto a los padres con los especialistas necesarios.

Este equipo de médicos y enfermeros ayuda a coordinar las terapias intrauterinas necesarias, planifica la vía y los plazos del parto, y ofrece una transición sin complicaciones en la atención del recién nacido.

Fetoscopic surgery for spina bifida

Edward Ahn, M.D., Pediatric Neurosurgery, Mayo Clinic Children's Center: The traditional treatment for spina bifida is we generally fix the spine problem after the baby's born, usually within the first one or two days after the baby is born. But since the studies have shown that prenatal surgery is beneficial, we have an approach where the uterus is opened, and then we can fix the spinal defect while the baby's in their second trimester. And that, of course, shows the benefits.

But again, the risks behind that are risks of uterine rupture, requiring a Cesarean section afterward, and the risk of premature labor. With a fetoscope, what we're doing now is we can access the uterus and access the fetus by looking through scopes.

And we can, similarly, repair the spine defect just through the scopes itself. And this is involving simply placing ports within the uterus rather than opening the uterus up.

And through the ports, what we do is we visualize on the screen the spine defect. And we repair the defect through tiny instruments that go through the scope itself. And that way we leave very little impact on the uterus.

Studies have shown that prenatal surgery for spina bifida is beneficial. It's proven to improve the infant's outcome with regard to being able to walk and also with their outcomes with regard to hydrocephalus and development of Chiari malformations. So that's been proven.

And the development that we want to talk about is the use of fetoscopic surgery. The main disadvantage to a prenatal surgery is the risk of having a premature delivery. And with a less invasive fetoscopic approach, we can get closer to that target of a full-term delivery and make the situation safer for both the baby and the mother.

Rodrigo Ruano, M.D., Maternal and Fetal Medicine, Mayo Clinic Children's Center: The main objective is to reduce the obstetrical risks. So that means reduce the chance of opening the uterus, and that means that we want to reduce the risk of uterine rupture. Contractions-- so those patients, they will be able to have contractions. They will be able to labor, so they will be able to have vaginal delivery.

And our goal is to have those patients deliver close to term. So we hope to improve, also, the gestation age that they are going to deliver those babies.

This procedure needs to be done, of course, in a sterile way, operating room. Usually we have general anesthesia because we need to relax the uterus, even though we are doing less aggressive under fetoscopic view. But we need to relax the uterus, so we do that under general anesthesia.

And then we expose the uterus, so we do a laparotomy. We open the maternal belly, the abdomen. And then we expose the uterus. Instead of making an incision in the uterus, we are just going to puncture, make a tiny, tiny incision, just to put the scope inside.

And then we find the best way to avoid the placenta. So we need to be away from the placenta. And then we position the baby, the fetus. We put the head down, usually. So you hold the head. And then we put the back up.

And then it's interesting because the technique was developed in a way, that we developed together, that we put half gas and half water inside the uterus, so we expand it a little bit with gas. Why? Because inside the gas, we can visualize better the spina bifida defect.

So we put the back of the baby up, and we put some gas inside the uterus. So that means that the baby is going to be facing down, head inside the water, or the amniotic fluid. But their back is going to be upward, and then we are going to have the gas. And then we introduce the ports.

Dr. Ahn: So through the ports, we can introduce a scope and look at the baby's back. The issue with the baby's back is that there's an opening. So it's not covered by skin. It's not covered by bone. Instead, we see the exposed spinal cord and nerves. So that's, by definition, the spina bifida defect.

So with the scope, we have that visualized. And then our job is then to free the spinal cord and the nerves from a cyst membrane that surrounds it and is attached to it, and then to completely release it from all those attachments.

And then the spinal cord and nerves is then tucked back into where it should be, the spinal canal. And then our job is then to close layers of skin over top of the opening. And then, by doing that, we're not letting any more of the spinal fluid, the nerves, come outside of the defect.

So all that's done through the scope, using sutures that are tied with visualizing under the scope. And by then, we should have a single incision that can heal as the fetus is developing.

I think that the family should have the option to this less invasive approach for several reasons. Through a less invasive approach, through scopes, effectively, should be a reason to come here.

Make the referral early. We're in a time window where we restrict our interventions for the fetal surgery for spina bifida to be somewhere between 19 and 26 weeks. But it has to be within that window.

So often when the diagnosis is made, you really have to get a lot of steps in the process in place for the surgery to occur. Many team members involved, and the planning really starts rapidly afterwards. So the earlier we know about it, the better.

Dr. Ruano: Patients carrying babies with spina bifida who are seeking for evaluation at another place, there's no risk for traveling or flying unless they have some other problems, for example, preterm contractions, if they rupture the membranes, of course.

So of course, the communication between the referring provider and the center is very important because we need to see the initial condition of the patient. But if the patient is fine, is doing well, it's just the baby's concern, then there is no risk for traveling.

Dr. Ahn: The culture of Mayo Clinic is collaboration, so you have experts in each of their own disciplines working together. So in this specific scenario, you have a mother who's pregnant with a fetus diagnosed with a neurological condition. And you think about all the different specialists that you need involved.

You need a specialist for the mother. You need a specialist for the fetus, who has the neurological condition. You need a specialist to provide the anesthesia for the mother, and then someone to provide the anesthesia for the fetus.

And then you have to think about who's going to care for the baby overall after the baby's born, and then the long-term needs of the baby. I mean, think about how many fields that you're talking about.

And so one provider cannot manage all of this. And I think it's very fitting for Mayo Clinic, who has experts in all these different fields and encourages the collaboration between all the different caretakers to come together. And there's no solo player here. We're all working together as a team. And I think this is a perfect example of how it works.

You know, I've seen the perspective, as someone who takes care of children with spina bifida, go through the challenges of trying to live a normal childhood and the challenges of being someone with a spine abnormality with weakness of your legs and not being able to have normal bladder function and potentially having hydrocephalus, dealing with depending upon a shunt for normal function. And that ends up becoming like a lifeline for the children.

And it is something that we believe in, that if we can improve any of these things for the child, then we need to do everything we can to make it possible for the families. So if a baby's born with spina bifida, that child will live, but will live, potentially, a completely different life if they didn't have the intervention. But they will live. And so it's not a life or death situation where we're intervening.

However, it is a completely different life in the sense of, for example, not having hydrocephalus that affects the brain or being able to use your legs better, if you have the fetal intervention, or not having a brainstem problem. All those things are, of course, crucial for the neurological development of the child.

And you know, when you ask why do we enjoy doing fetal surgery, it's the fact that I like interacting with the families. I like interacting with the expectant mother. And when they're faced with the decision about doing this surgery, they could, A, choose the traditional path of having the baby. The baby undergoes all these interventions and potentially has a completely different life.

Or the mother then decides to have the surgery done by Dr. Ruano and myself. And when the mothers then decide, well, if there's a potential benefit to my baby who's not even born yet and I can do something about it and have surgery done on myself, then, hands down, we find that the mothers will say yes.

They will make that decision without a question. And I always step back and realize the bravery of the family, the mother, the father, and everybody involved, that they're going to put their lives literally on the line for the outcome of the baby.

Unidad de cuidados intensivos neonatales y Clínica de seguimiento de la Unidad de cuidados intensivos neonatales

La Unidad de cuidados intensivos neonatales de Mayo Clinic se especializa en la atención centrada en la familia de bebés prematuros y recién nacidos gravemente enfermos. Se permite que las familias permanezcan al lado de la cama del bebé y se les brindan espacios de apoyo en toda la unidad, como áreas y salas de espera para las familias, dormitorios para padres y salas de lactancia.

La Clínica de seguimiento de la Unidad de cuidados intensivos neonatales de Mayo garantiza la continuidad de la atención médica de calidad una vez que el bebé recibe el alta de la Unidad de cuidados intensivos neonatales.

Continuidad de la atención

Mayo Clinic proporciona atención médica de por vida para la espina bífida; por lo tanto, tu hijo puede pasar a los cuidados para adultos para su seguimiento y así garantizar una atención de calidad continuada.

Ubicaciones, viajes y alojamiento

Los campus más importantes de Mayo Clinic se encuentran en Phoenix y Scottsdale, Arizona; Jacksonville, Florida; y Rochester, Minnesota. El Sistema de Salud de Mayo Clinic cuenta con numerosos establecimientos en varios estados.

Para obtener más información sobre las visitas a Mayo Clinic, selecciona tu ubicación debajo:

Costos y seguro médico

Mayo Clinic trabaja con cientos de compañías de seguros y es un proveedor de la red para millones de personas.

En la mayoría de los casos, Mayo Clinic no requiere la derivación de un médico. Algunas compañías de seguros requieren derivaciones o pueden tener requisitos adicionales para determinada atención médica. Todas las citas médicas se priorizan en base a necesidad médica.

Más información sobrecitas médicas en Mayo Clinic.

Por favor, ponte en contacto con tu compañía de seguros para verificar tu cobertura y obtener cualquier autorización necesaria antes de tu visita. Muchas veces, el número de teléfono de atención al cliente de la compañía de seguros está impreso en el reverso de tu tarjeta de seguro médico.

Otra información sobre facturación y seguros:

Mayo Clinic en Arizona, Florida y Minnesota

Sistema de Salud de Mayo Clinic

Dec. 14, 2019