Steven Robinson

Steven's 100 Miles in 2023 page

Fundraising for SHINE

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RCN 249338
We offer specialist advice & practical help to all with spina bifida & hydrocephalus


In May 2013, just 7 months after getting married, my wife fell pregnant with our first child. We were both overwhelmed with happiness, our perfect love story was about to grow into the perfect little family!

Fast forward a few weeks and we told all of our close family and friends our fantastic news (mainly because morning sickness would have given the game away if we hadn't!). We gifted each grandparent a child's book in a gift bag with a note that read Dear Grandma/Grandad, please read to me after my arrival into the world in March 2014. My wife was so excited she started to buy little bits for the nursery including a wall sticker, which read, "twinkle twinkle little star don't you know how loved you are"

We had Friday 23rd August pencilled in on the calender... the date of our first scan. We had booked a weekend in Newcastle for that weekend (a last little trip before 2 became 3). When Friday 23rd came around my wife and I arrived early for our appoinment, having not had much sleep through excitement! The sun was shining and we both had a happy spring in our step.

The waiting room was busy, and looking around there was a lot of women at various stages of pregnancy. I couldn't help but feel excitement looking at the baby bumps thinking that would be us in a few weeks. There was also something strange about sitting in a room where everyone knows why your there, when you have been keeping it secret for months.

As we were called into the appointment, the sonographer introduced herself as my wife laid on the bed. She told us she would be looking to see how many babies were in the womb and looking for any major abnormalities. Great, we thought... lets hope there's only one in there!!

Fast forward a few minutes and the sonographer turned the screen to my wife and I so we could see the (Just one!) baby on screen. A very wriggly baby almost doing back flips we looked on in amazement. As the sonographer was moving around, she was showing us the obvious body parts... 10 toes, 2 feet, 2 legs etc. Just as she got to counting 10 little fingers, babies arm extended and gave us an almighty wave on screen. The sonographer then started to do the measurements and told us she was struggling so asked us to go for a little walk around to try and get baby to move into a better position, and then she would call us back in. For about an hour we walked around and used the time to ring relatives to tell them the good news... Our one baby was wriggling around and even waved at us on screen.

When we finally got called back into the room, the waiting room seemed almost empty. The sonographers mood this time was completely different, she explained that the real reason for inviting us back is for a re scan as I think there's a problem. I don't think your babies head has grown properly. I need a second opinion.

As she left the room to grab a colleague I was still full of optimism not realising the severity of what we had just been told. I even remember asking the 2 sonographers "so when will the baby's head grow".

The answer to my question of course was it wont! Shortly after the second opinion our baby was officially diagnosed with anencephaly. A neural tube defect that is fatal. Whether it be in the womb, during birth or a few hours/days/weeks after birth our baby was going to die. I had literally gone from the top of the world to the lowest id ever felt in mere seconds.

In the hours that followed my wife and I had to make the single hardest decision of our lives. If, when and how do we want to end the life of our very much wanted and very much loved baby. We decided that the best option would be to terminate the pregnancy, also opting for a full post mortem once our baby was born.

My wife gave birth to our baby on 27th August just 4 days later, the baby was no bigger than the palm of my hand and it was clear to see where the skull had not sealed off. We had a small naming ceremony where, not knowing the gender we decided on the name Star taking our inspiration from the wall art my wife had bought. We later found out following the post mortem that it was a boy and but for the skull sealing there was nothing genetically wrong.

The following weeks and months we were blessed with support from both the hospital who conducted a short service about our boy and also through our own research, we found a number of support groups and other people who this had affected. 

It is this support and understanding from organisations like SHINE which helped us to build back up. I hope the funding can go towards helping raise the awareness of anencephaly and helping those families who are affected by this.

About the charity


Verified by JustGiving

RCN 249338
Shine provides specialist support from before birth and throughout the life of anyone living with spina bifida and/or hydrocephalus, as well as to parents, families, carers and professional care staff. Our wonderful supporters make our work possible, your fundraising makes all the difference!

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