This is Sam’s story ...
Sam’s 20-week scan revealed that her much longed for baby, Beth, had spina bifida. Devastated and desperate for information, she searched the internet and found Shine.
'We didn’t even know what spina bifida was. Rosemary (Shine’s Senior Health Adviser) was fantastic, she explained everything simply, that basically Beth’s spine was like a zip that hadn’t been done up fully.’
Beth was just one day old when this picture was taken, an hour after emergency surgery to close the gap in her spine. It is without doubt a very frightening time for parents, suddenly being plunged into this scary, world of hospital appointments and medical procedures. They are expected to be strong for their babies (and often the rest of their families) at a time when they need support themselves more than ever before.
'You’re drowning, floundering about on your own. Having Shine on the end of the phone is like a lifeline. My Shine support worker has been a constant tower of strength since day one. She was there when Beth was born, and on the day that Beth’s hydrocephalus was diagnosed she drove for an hour, just to be with us when her shunt was fitted.'
Shine assesses the needs of babies/children and their parents and care-givers. This means we ensure that the whole family receives not only medical and educational support, but also the social and emotional support that they all need to live happy and fulfilled lives.
‘Beth is our most treasured possession, and given the same circumstances, we would do it all again. She has a fantastic sense of humour, and is still top of her class despite taking 8 weeks off to recover from bowel and bladder surgery. She’s amazing! But we could never have managed the way that we have without our fantastic family, friends and Shine.’
We are indebted to Sam for sharing her story and giving us all a glimpse into her world so that others will not have to face a future on their own.
Every day in the UK, at least two of the babies that are conceived will go on to develop Neural Tube Defects (NTD’s) like spina bifida. Of the babies born with spina bifida the majority will also have hydrocephalus which results in damage to the brain. Those affected need the specialist support and advice that only Shine provides.
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