The Center – located in the Spinal Unit of Niguarda Hospital in Milan – was founded in the ‘90s by ASBIN Association (Association for Spina Bifida and Hydrocephalus of Niguarda Hospital, Milan), which has been continuously supported the activities.
The Center represents an excellence in Italy and guarantees a full take on responsibility of children with Spina Bifida and their families, ensuring a multidisciplinary follow up that regards medical, surgical, rehabilitative, psychological and social aspects.
Currently ASBIN bears the following costs:
- A pediatrician coordinator
- two neuro-urologists, as consultants
- two psychologists, as consultants
- A nurse
- Administrative office
- Communication staff
Thanks to the support of the Association, meetings are organized for families, children and school staff to support the best social inclusion, accompanying the patient during his growth.
The coordinator organizes follow up of children until they are 18 years old – respecting multidisciplinary approach – and, in collaboration with maternity unit of the Hospital, gives advices to parents when a foetus with this congenital malformation is diagnosed, counselling them towards a difficult conscious choice.
The Center offers an unique organization which is compliant with the Regional law no. 23 of Lombardy Region.
The Association supports also research and training, promotes initiatives for the prevention with folic acid, organizes meeting focused on clinical and psychological topics for professionals.
Thanks to its cultural background and to the type of services offered, the Center is an important benchmark not only at regional level but also at extra-regional level (30% of patients comes from other regions).
The activity of the Center covers various fields:
- Prevention: parents at risk of conceiving a child with Spina Bifida are addressed to a gynaecologist from our Hospital who is an expert in the field.
- Prenatal diagnosis: in this phase the paediatrician of the Center and the gynaecologist are involved; in some cases, the advice of a neurosurgeon of the Hospital is required.
- Managing of pregnancy-delivery-infant: the pregnancy is followed by the gynaecologist with particular attention to a possible develop or evolution of hydrocephalus. This complication could bring to a delivery before the expected date or, in more serious cases, to an intrauterine surgery. The delivery occurs at Obstetric Unit of the Hospital. The Neonatal Pathology Unit takes care of the baby patient, of the suitable pre-operative tests and of the post-operative care until the hospital discharge. Plastic surgery of the malformation and a possible ventricle-peritoneal shunt or ventriculostomy are carried out by the neurosurgeon of the Hospital.
After the postoperative phase, the Spina Bifida Center takes care of the patient with a multidisciplinary approach and the family is supported by the psychologist.
- Managing of the child: it is done in a multidisciplinary view, according to Guidelines on Rehabilitation of Spina Bifida child realized in 2004 for the SIMFER (Italian Society of Rehabilitation) by a commission of experts chaired by Dr. Tiziana Redaelli. The follow up is organized by the paediatrician, together with the nurse, who coordinate specialists to guarantee continuity to the diagnostic and therapeutic process personalized for each patient. Paediatrician and nurse work in the Center from Monday to Friday, from 9:30 a.m. to 1 p.m., and during these hours are available also for the numerous phone consultations and for the reservation of medical visits and examinations. Moreover the nurse is expert in teaching the manoeuvres of urinary catheterization to parents and children.
- Managing of the adult: the location of the Center inside the Spinal Unit has facilitated an adequate cultural training that allows also to handle adult patients.
The activities:
- Complete follow up for rehabilitative, urological and andrological aspects
- Rehabilitative treatments for post-operative cases or when the type of orthoses is redefined
- Occupational therapy to enhance personal autonomy
- Advices for school and work integration
- Sport training