Our Sweetheart Nicole

From the moment Nicole came into the world, we knew she was special. She was, and still is, the strongest little girl we have ever known. Nicole was only 4lb8oz when she was born and we had to rush out and buy premature clothes because the tiny baby ones didn’t fit her! She was just adorable, like a little doll! Every one who came to visit her couldn’t believe how tiny she was and they all said “she’s been here before” because she seemed to be taking everything in.

The years went by beautifully, and it was only when Nicole’s lack of speech became a concern around the age of 2 yrs and soon after, we were having regular sessions with speech therapists where we tried Makaton and picture cards which were hit and miss. Nicole always had concentration and attention issues so nothing seemed to stick, we thought it was just her nature that she would be flitting from one thing to the next…. We have never been able to read a book to Nicole as she would just flick the pages or end up throwing it when she’d had enough!

Concerns were raised at school because we should have been ready for nursery but she wasn’t. We decided to go and see a paediatrician purely because her lack of speech. We thought it was better to get her checked out to see if there was anything physically wrong with her throat or vocal chords which was preventing her from speaking.

We were soon made aware that speaking was the least of our concerns and there was an underlying issue to the lack of speech and behavioural characteristics Nicole was displaying. Following a range of behavioural and cognitive tests, Nicole was soon diagnosed with Global Development Delay. Then a matter of days after our appointment, Nicole had her first seizure. Completely out of the blue. I was pregnant with Jessica and Matthew was painting at home, so we went up to Glasgow to keep away from all the mess and the fumes.

It is hard to put into words the fear, watching her and being helpless to do anything. Sheer and utter panic and desperation. We don’t want to say what we thought would happen but you can imagine, having no history of seizures in either side of our families, we didn’t know what was happening or what we were seeing. All we knew was that our baby girl was lifeless, her beautiful porcelain skin had turned blue, she was struggling to breathe and at one point, stopped breathing for a few seconds.

After being discharged from hospital in Glasgow, we were rushed in for an EEG at RVI back home in Newcastle and Nicole was diagnosed with Epilepsy. The time that followed was a busy period. Lots of new information to take in, medications, appointments, plans for schools. We were plunged into a new world and had to adapt, which we did with the help of our families.