Sasbah’s #GivingTuesday appeal is about children like Sophia and their families. Sophia’s parents learnt at the 20 week scan that she had hydrocephalus. At the next it was confirmed that Sophia had spina bifida mylomeningocelle. At birth she was whisked off for surgery. Babies born with this type of spina bifida literally have a hole in to their back, over the spine, which has to be closed surgically to prevent further damage to the spinal cord. And around 90% of those born with spina bifida will also have hydrocephalus, so a shunt is fitted to drain the excess cerebro-spinal fluid. For parents all this surgery means tortuous hours waiting for their baby to come back from theatre. After 9 days Sophia was able to go home. Her Mum, Kerri, was over the moon and remembers, “My biggest fear since we found out about the conditions was that we would never get to bring her home.”  At 4 weeks old Sophia showed signs of being unwell and her head had grown significantly. An MRI showed a blockage in her shunt – a life threatening situation – so more surgery was. Then at 6 months Sophia became very sick with another shunt malfunction and underwent surgery for shunt number 3.

Thankfully since then Sophia has gone from strength to strength. As Kerri puts it, “Sophia had punch from the minute she was born!” Sasbah has provided support from specialist Advisers to ensure Sophia has the best possible start in life. Through residential breaks, social activities and a local support group the whole family get to meet others sharing their situation and benefit from the mutual support essential to coping with the challenges they face. Sasbah’s support for Sophia and her family will hopefully be there whenever they need it. There for them and all the families in Sussex who have a child with spina bifida or hydrocephalus. Our #GivingTuesday appeal aims to ensure that happens. Please donate now to help us reach our target and share Sophia’s story so others can help too.  Thank you!