Spina bifida/hydrocephalus within a baby is diagnosed when the prospective mother attends a routine ultrasound scan. When this occurs the medical staff pass Shine’s details onto the parents, giving them the opportunity to contact our trained staff, who can help with both practical and emotional support.

Learning your unborn child will require major surgery within hours of their birth and still be paralysed below the waist and have brain injury through hydrocephalus is, as you can appreciate, a very traumatic experience, requiring support and advice from Shine’s experienced advisers. We can also put them in touch with parents that have been through a very similar experience.

When the baby comes home Shine’s nearest Support and Development Worker (SDW) will visit to answer any questions the parents may have regarding the daily procedure of caring for their newborn. The SDW will then be available via all the usual 21st century contact methods, including Skype, and if things become really tough, regular home visits will be scheduled.

The babies themselves are welcomed into the Shine family by becoming members of our Benny Bear Club and given a replica Benny Bear (the Charity’s mascot) to give them a sense of belonging from their first day at home.