Spina Bifida means about as much as a "split vortex", known is the disease as "open back". The defect of the spine is already created at the beginning of pregnancy and can have multiple effects. What are the causes? What treatments and aids are available?

If the neural tube does not close

Baby medical examination

Photo: © fotolia.com/ S.Kobold

Very early in pregnancy, about the third week after conception, the embryo is created the neural tube, the precursor of the brain and spinal cord. Throughout its development, the spinal cord is well protected embedded in the spinal canal of the vertebral column. Is there in this process problems, the neural tube is not completely closed, under certain circumstances and there remain vacancies. Spina Bifida, "eddy gap", it's called these defects. Because the spinal cord is here freely escape from its channel and can form visible bulges and is not even covered in some cases of skin, has become synonymous the term "open back" common.

Diagnosis in the normal care Ultrasonic

The diagnosis is made prenatally spina bifida in almost all affected children, usually around the 20th week of pregnancy in normal precautionary ultrasound for growth and weight measurement. "Reykja" * learned in the fine diagnosis of the specific nature of their daughter. The term was known to her, but a clear idea of ​​what it actually covers, she had not. "The doctor explained it very carefully, trying to advise me," she recalls.

Possible consequences of spina bifida: minimal to extensive

The expectant parents experienced in these conversations that spina bifida is far more than a cosmetic problem: Unprotected and thus affected by external influences, the nerve fibers of the spinal cord can their job to ensure smooth communication between the brain, organs, muscles and skin, no longer meet. "Typically, the mobility of the legs is then usually restricted or even eliminated, it show up voiding disorders of the bladder and the rectum, the kidneys can be damaged in the course of life through urine backflow and repeated infections. In addition, the cerebrospinal fluid does not flow normally from via the spinal cord, so that in most cases, hydrocephalus, a so-called water on the brain, "is created, explains Dr. Christian Clemen, senior physician at the Pediatric Surgery at the Klinikum Dortmund, for 15 years professionally familiar with the disease and for three years has a daughter with spina bifida. "But you have to know that the Spina Bifida is a very complex disease." Depending on where in the spine the defect is and how it is pronounced, it can on the one hand be hardly noticeable, on the other hand to paraplegia and intellectual disabilities have far-reaching implications.

Treatments: surgery, shunt, orthopedic equipment, surgical before birth

"What will turn out exactly that, we can not forecast before birth," Dr. Clemen. "That's why pregnant women are aware of all possible histories, but also to the possibilities of medicine." This includes, among other things, that

  • pending in the further pregnancy tests during regular gynecologist and Pränataldiagnostiker
  • the child will be born by caesarian section to not expose to unnecessary risks of infection or other injury to the spinal cord
  • the baby for the same reason after birth is operated immediately to close the exposed spinal cord with the sensitive nerve fibers
  • maybe later a catheter (= shunt) must be placed from the head to the abdomen, so that the brain does not accumulate water

Likewise, parents have to adapt to numerous follow-up on more hospital stays, regular physiotherapy, perhaps orthopedic procedures or tools such as so-called AFOs with whom Dr. Clemens got daughter run and now can independently climb stairs, or a wheelchair as Reykjas daughter needed him down because of her paralysis from belly button.

New alternative: a surgery before birth

As an alternative to the previously common practice to close the open back after giving birth, parents in Germany can still also consider an operation of her child in the womb since of 2002. This aims to protect, as well as to prevent the loss of brain fluid and the known sequence problems for head, brain, legs against damaging influences the spinal cord even in pregnancy (such as in the amniotic fluid floating chair of the baby or shocks to the uterine wall) and limiting other organs.

"Mother and child are put under general anesthesia, we run through the stomach endoscopically three small surgical tubes one by which we close the malformation surgery," the pediatrician says Prof. Thomas Kohl, the main features of which he developed procedure, which he - as one of currently only two physicians worldwide - at the German Center for Fetal Surgery and Minimally Invasive Therapy (DZFT) of Rhoen-University Hospital in Giessen practiced. "Our way out of the question if a) the mothers are healthy and not obese and b) we can foresee a clear advantage for the child because of the sonographic preliminary investigations." The several hours of intervention - a health service - takes 21 to 27 . pregnancy week instead. The children come in principle by Caesarean section to the world average in the 34th week. Overall, in the last three years, about 50 children were operated.

Critics say the risks are too high

The procedure is a controversial topic among pediatric surgeons, Dr. Christian Clemen it looks very critical: "The method is still immature and in the experimental stage, there are high risks for premature birth with all its problems." About this clarifies Prof. Kohl open, but added that "the intervention no longer a Experiment and you can make realistic information on opportunities and complications "So climb with the method of constant experience and refine their benefits for the children -. a much better leg function, less shunt systems, often no more surgery after birth - while complications rare auftreten.Gutachter and parents reports confirm this.

Causes and support

Reykja and her husband were more than three years, the risks of the operation is still too high, such as family Clemen they decided against it. Neither came for an abortion in how they vote in Germany, according to Professor Kohl good 80 percent of parents of spina bifida diagnoses; are born each year about 200 to 250 children, says Dr. Clemen. "We can advise us instead, the geneticist, the pediatric neurologist, the neurosurgeon and extremely helpful to us in the Diakonie" said Reyjka. "Because of course we were initially very shocked disbelief, sad, anxious. And very long angry - why do we ?! Why we can not get a healthy child? "

The causes of spina bifida are not clear

A medical reason often can not be identified: "It is assumed, among other things that the neural tube due to environmental factors or by taking certain medications, such as anti-epileptic, does not close. Genetic causes come into consideration, but so far "no evidence, says Dr. Clemen. "The main assumption is a folic acid deficiency. However, this is possibly the cause in only 30 percent of cases, "he says - even from personal experience: His second daughter was born with spina bifida to the world, although his wife, a pediatrician before pregnancy took adequate folic acid, is fed healthy and healthy living. "To minimize risk, the regular intake of folic acid is still worthwhile," says Christian Clemen.

Versatile help and support possible

Since the psychological and domestic burdens of living with Spina Bifida are to him very aware from his own experience, the doctor is in talks with parents intensively on their many questions off the medicine and may firsthand advice: For example, on what helps one gets the request for severely handicapped the social security office about levels of care at the health insurance to tax relief the tax office. Or about how difficult it can be for siblings to often have to stand and how important it is to talk openly with them. Cause spina bifida child benefit in integration kindergartens early with normal healthy children to come into contact (and vice versa), and that they can be supported in schools by integrating companions.

With expert information and SPZ ASBH help you

Parents whose doctors thus not so familiar, can in social pediatric centers (SPZ) inform or, as Reykja recommends contacting the Association Spina Bifida and Hydrocephalus Association (ASBH), "either with the local support group or online at www.sternchenforum.de. You can eat individually and promptly accurately answered the questions that employ a straight. "

Reykjas daughter is now almost three years old. Their limited mobility is the only fundamental difference to other children, her mother says, "She is a very warm, open-minded girl with exactly the same interests as their peers. We love them very much and are very grateful that we have them. We wish for them that they will live a happy and independent life. "

* "Reykja" is achievable under this Nickname about their Urbia profile questions, but would otherwise remain anonymous.

service

  • The Association Spina Bifida and Hydrocephalus e.V. (ASBH) informed under www.asbh.de detail about the disease. Here you can also many brochures as the comprehensive "Guide ASBH spina bifida and hydrocephalus" incl. Order CD or a nursing journal.
  • A readable review describes the book "Serendipity. Records about life with my disabled child "by Gisela Hinsberger. Brandes & Apsel, new edition 2014 (Order here from the publisher)
  • The intervention in the womb is on the homepage of the German Center for Fetal Surgery & minimally invasive therapy presented.