Newborns born with a spinal closure defect suffer from neurological deficits of varying degrees. This usually affects the legs and the continence function of the bladder and bowel. In many patients, the circulation of the cerebrospinal fluid is also impaired, which can lead to hydrocephalus (hydrocephalus). Dysfunctions of this kind occur either in isolation or in combination, but in most cases place a considerable burden on patients and their families. Depending on the disability, children and families require lifelong individual medical care from highly specialized physicians and therapists:

Orthopaedists and physiotherapists are the people to contact if the lower extremities are affected

Neurosurgeons or pediatric surgeons work together with pediatric neurologists to treat circulatory disorders of the cerebrospinal fluid and implant the required valves (ventriculo-peritoneal/atrial shunts)

Pediatric surgeons and pediatric urologists, together with pediatric nephrologists (kidney specialists), diagnose and treat functional disorders of the bladder and bowel, as well as uro- and continence therapists

The care of these patients begins immediately after birth and is continued by pediatricians until puberty. The transition from adolescent to adult, which can be a critical phase for any adolescent, is a particular hurdle for these patients, as they are leaving years of care in which stable relationships of trust have usually been built up. The transition to treatment by adult medicine is then often perceived as a break. In this case, it is advantageous if all disciplines work in the same Clinical Department and the transition from pediatric to adult medicine can be carried out continuously without disruption or loss of information.

In any case, it is strongly recommended that affected families contact self-help groups. After all, who better to support an affected person than the community of patients suffering from the same illness?

Today, occlusive defects of the spine are usually diagnosed during check-ups and therefore before birth. In these cases, we advise the parents about the expected functional disorders and their treatment options. If you wish, we will be happy to accompany you if you continue to be cared for in the prenatal diagnostics department of the Clinical Department of Gynecology and Obstetrics at the MHH.

After the birth, we continue to provide seamless care for the children in the MHH Children's Clinic. The following Clinical Departments are involved in this interdisciplinary treatment:

Together with our colleagues in neuropaediatrics, cerebrospinal fluid circulation disorders are treated surgically by the MHH neurosurgery department.

The Clinical Department of Pediatric Surgery diagnoses and treats functional disorders of the bladder and bowel together with our urology colleagues. This close cooperation makes the transition from pediatric to adult medicine very easy, as both Clinical Departments feel equally responsible for the care of patients and the spatial assignment is based on the age of the patient. This also applies to urotherapeutic care, which is provided by the same team regardless of age.

The Department of Pediatric Orthopaedics is spatially and organizationally assigned to the Annastift in Hanover. However, our colleagues come to the MHH Children's Hospital for treatment and treat patients on site.

We recommend that parents get in touch with a self-help group as early as possible. Here we refer to the website of the Arbeitsgemeinschaft Spina Bifida und Hydrocephalus e. V. www. asbh.de/, whose information brochures we have available for parents. Furthermore, we recommend and arrange for a local connection to one of the 120 social pediatric centers in Germany.

The aim of interdisciplinary patient care is not only to provide optimal orthopaedic care and reliably prevent increased cerebrospinal fluid pressure, but of course also to maintain kidney function and achieve social continence for stool and urine. Using the example of urological/nephrological care, here is the care plan that we have drawn up in-house and which forms the basis for our examination intervals. Of course, such a calendar can only be a guide that is individually adapted for each patient.

Adolescent patients and their parents in particular are constantly asking themselves what to do when they grow out of pediatric medical care. For decades, this issue has been neglected and ignored. Thanks to the initiative of self-help groups, however, there are new answers to this question. Under the heading of "transition", the respective disciplines have developed concepts that can be used to accompany the people affected from pediatric to adult medicine. This results in age-appropriate care and contact with the long history in pediatrics is not lost. In the course of this development, we have also established a so-called transition consultation hour, which is increasingly being used.