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Awareness Week 2019: Hannah

[Joanna] On behalf of Hannah, 3:

What does living with spina bifida and/or hydrocephalus (SB/H) mean to you? (Or your child?)

'Today starts spina bifida and hydrocephalus awareness week. My journey with my spina bifida and hydrocephalus warrior began just over 4 years ago. I wont lie it's been 1 hell of a journey from the worst lows to the greatest highs and achievements. 1 of them lows is finding out at your 20 week scan that the daughter you've waited your whole life to have will now be born with both these conditions. If I'm honest I hadn't a clue what spina bifida or hydrocephalus was I felt like my whole world was crashing down around me or I was having the worst dream ever and kept praying I'd wake up from it. See with spina bifida and hydrocephalus there's no certainties doctors cant tell you what's going to happen when your child's born they just give you all the worst case scenarios. All we knew was she had the worst form of spina bifida called spina bifida myelomeningocele and that the chances of her ever walking would be slim. My heart broke I don't remember hearing the rest of the diagnoses as all I kept thinking was my babies not going to walk and the rest of that day was a daze. I heard bits and pieces of things at my next check ups like lemon or banana shaped when they were talking about her head I honestly thought they were saying her head would be lemon or banana shaped. I soon figured out they were talking about parts of her brain like her verticals. The whole process of trying to take in all this information when your feeling at your most vulnerable is so hard. Your hole body is shaking with fear and panic of what the future will hold. All the while trying to tell yourself to keep calm and try not to stress as it's not good for the baby. It's the biggest roller coaster of emotions you'll ever feel. When I went into labour a week early all sorts of panic set in I was terrified and keep thinking I'm not ready for this I don't think I can do this. Anto was by my side the whole time telling me how everything was going to be alright that no matter what happens were in this together and i know he meant it but i could see the fear in his eyes even though he was trying to be the strong 1. Roll on 1.36am on the 23/02/2016 my beautiful perfect amazing little tinker bell ( that was my nickname for her as I thought my baby might not walk but she'll fly ) was born weighting 6lb 6oz and she honestly couldn't of been any more perfect. She stole mine and her dads heart right there and then we weren't allowed to hold her as she had to go straight to the coombe icu but I some how knew she would be ok. I know it sounds crazy but I could see the strength in her eyes as she looked at me from her incubator b4 they wheeled her out of the room. So this began my little warriors spina bifida journey and I honestly wouldn't change 1 little bit of her for the world. I wish I could change the world for her sometimes though. Shes been threw a lot but always bounces back smiling were only home from hospital a few days after a long 2 weeks in temple street but she battled her way through another operation as no matter how sick she is she fights with all her might that's the thing the doctors never tell you is that these children are incredible and brighten up even your darkest days. They show you a whole new level of appreciation for the life you have and the person you now want to be. Yeah Hannah was born with both spina bifida and hydrocephalus but they didn't define her. Our Hannah my little tinker bell is the most amazing little girl I've ever known and some people never get to meet their heroes but I gave birth to mine and I'll be eternally grateful that I was chosen to be her mammy.'

If you could make people aware of 1 thing related to SB/H, what would it be?

'I suppose just general awareness. Who ever said walking defines happiness😁'

What is your dream for the future?

'Our dream would be for Hannah to live independently, within a society where inclusion and accessibility are the norm and not the exception.'

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We are Spina Bifida Hydrocephalus Ireland (SBHI). We are the national organisation for everybody living with spina bifida and/or hydrocephalus across Ireland. The Equality Now website is the hub for our campaigning and advocacy activities. Thank you for visiting and please to get in touch if you need more assistance.


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