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The mood in the X-ray room changed dramatically

We found out 4 days before Emily was born, that she had a disability. I was 29 and a half weeks gone. We found out, after a check with the midwife, who was concerned that Emily’s head wasn’t in the right position.I was sent to Portsmouth Queen Alexandra hospital, Dan met me there and I was sent for an x-ray. The mood in the X-ray room changed dramatically. The radiographer silently went out to get the consultant.

The consultant started talking in medical terms. He mentioned the word ‘hydrocephalus’ and ‘water on the brain’. We then silently walked the huge long corridor with the speechless nurse until we eventually reached a hospital bed, for me.

Our brush with the unknown, Disability.

Lots of big medical words followed. Discussions about emergency cesareans, and the gender of my baby accidentally revealed. But this was late Friday afternoon and the consultant needed to confer with Southampton General Hospital. Southampton was faxed the results, and they decided that they could wait until Monday to see me.

So that was it. Our brush with the unknown, Disability. We weren’t really given any information, that we could truly understand. Our brains were scrambled. Up until now my pregnancy was exciting, full of random morning sickness, but still it was an event that we were looking forward too.

Maybe the doctors had just got in wrong.

We were tasked with explaining to our friends and family the situation, but we didn’t understand it ourselves. People didn’t know what to say to us. Maybe the doctors had just got in wrong. By the end of the excruciatingly long weekend, we had just about convinced ourselves that this was the case.

Monday morning, and reality struck. We went to Southampton General, and I underwent further tests. Dan and I sat in the consultant’s room, with the consultant, his colleague, a neonatal nurse and 3 student doctors and their clipboards. This was the exact environment that the doctors felt it was best to tell us that not only did our daughter have Hydrocephalus, but also Spina Bifida. We were told about what would happen as soon as Emily was born and how she would be treated. We were shown around the neonatal ward. It was explained that Emily would be in their care for a couple of weeks.

They said they were sorry to be breaking this news to us, and there were charities that we could contact. We were given leaflets on the condition. We were told that we could apply for Disability Benefit when Emily was 3 months, and not before. How could we take this all in? The mountain of leaflets that we were given were folded and stuffed into the bottom of my handbag. The one piece of useful advice they gave us and we followed, was to ‘never Google the condition’. Wise words.

12 years on …….

12 years later, and we never expected what a loud independent, excited, fantastic girl Emily would become. The opportunities and lasting friendships that we have made just because Emily is Disabled.

 

Me giving a speech at Scope’s Christmas Carol Concert

This post was originally written as my speech for the Scope Charity Christmas Concert at St Pancras Church. The following was also included in the speech:

 

Scope has been an incredible support for us, for instance allowing me here today to talk about my story. We spent 12 years thinking, if only we had said this, or done that at the time. But I am actually doing it. Giving other families the chance to be informed and better prepared. If I hadn’t been given so many leaflets at the beginning of this story, and just been handed Scopes number. I could have been spared some of the anguish that my family had gone through. I would love to see Scope as the ‘go to point’ in hospital. The medical jargon could have been dropped, and we could have had a conversation with a real person about what we were going through. Some one who wasn’t panicked, and could say ‘it’s going to be alright’.

 

I’d like to give a big thank you to Phil Marsh from Scope for allowing me to share my story in such an amazing empowered way.

For more of my campaigns with Scope read Back With A Bang 

We’ve all got a story to tell. Please email me if you would like to share yours: aimee@rollinwithmama.com 

 

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2 thoughts on “

  1. Thirty one years ago this week I was given the news that my perfectly normal baby boy was not so “normal” after all. SMA was the culprit. I was devastated and cried non stop for 3 months. I felt like he had died and Been replaced by someone else. I will never forget the dispair I felt putting up the Christmas decorations and just going through the motions of a happy time. The feeling of loneliness was all consuming and only bad things were told to us by the consultants. It was terrible. I am writing this having just dropped him off with his able bodied mates to the local pub quiz. If only I had know them what a better person I would become because of his disability and how many doors he would open for me that I would never have gone through only for him. I was really moved reading your story as a lot of it mirrored my experience.
    I have turned into a Rottweiler regarding his disability rights and found a voice that in my shyness I never knew I had. As parents we are the battlers for our children’s future. Never give up on a fight you feel is right. Best wishes to you and your family

    1. Monica, our stories are so similar. It’s funny that a lot of us parents have developed this fighting streak, even if we have never had it before. Disability is not something to be scared of, yes it does have very very tough times, but as you say, it can be amazing. The Disabled Community is such a caring community to be part of. I don’t know where I would be without it. All the best to you and yours too x

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