Navigating a spina bifida pregnancy - Gemma's story

"Navigating a spina bifida pregnancy, or looking after a new-born can be overwhelming - but full of joy too!"

"Shine were mentioned to me by hospital staff just after I was given the news that my baby had spina bifida and hydrocephalus at 22 weeks pregnant. They gave me a Shine booklet, and it was just what I needed to help me understand exactly what my little girl’s condition would be. You always remember questions you should of asked after you’ve left the hospital and it’s too late – having the Shine booklet answered a few of those questions for me!

I will be forever grateful for Shine, and for Gill at Shine. I was put in contact with her when I became a member (shortly after receiving a Shine booklet at the hospital at 22 weeks pregnant). Gill would ring me on a weekly basis to check in. She would ask about me and how I was feeling.

Throughout all of my pregnancy, I was able to text or call Gill at Shine when I needed to talk to someone, and nothing was ever a silly question. I remember thinking ‘I bet I sound silly’ or ‘I bet they get asked that loads’, but honestly, it never felt like I was a burden. Without Shine I wouldn’t have got through my pregnancy as well as I did.

To me, being a member of Shine means you get additional family! You get help, support, advice, laughs and tears… just like a typical family! What I enjoy most about meeting other Shine members is how we can relate to each other. The support from Shine staff and other Shine members, it’s priceless.

I would like people to know that a health condition doesn’t have to define you! My little girl is amazing in every way and will go on to empower others in her situation. I’ll make sure of that!"

Thank you to Gemma for sharing your story.