Mia Caitlyn Cullen

My baby girl Mia was born on the 15th of August 2008, everything went well with the pregnancy and birth I was the happiest, most excited Mum about my healthy happy baby girl. Everything was going beautifully she smiled on the day she turned 6 weeks laughed at 10 weeks. At 3 months Mia started streaching her arms and legs out and crunching down like she had a pain in her stomach, she was doing this about 4 times a day. I thought she had wind or reflux or something so I took her to the doctor and she just said that she has wind and gave her some wind drops. It continued and I took her back again she told us to put her on a reflux formula. Nothing inproved but I still just thought nothing much of it and it was something that babies just get and it will pass.
One friday night Mia and i were enjoying a cuddle in bed together she was dosing off to sleep and i could hear her breathing in my ear nice and steady suddenly her breathing was very sharp and quick and i quickly looked at her and her eyes were back in her head and she was jerking her left arm rapidly and clenching her fist open and shut at the same time. I jumped out of bed and rushed her to the childrens hospital.
As soon as I told the nurse in the emergency department what I saw she took us straight in and we saw a number of doctors immidiately they told me from what I was saying she was doing that they were infantile spasms I didnt really know what that meant but i couldnt stop crying anyway i had an awful feeling something was very wrong with my beautiful baby girl. She was admitted to hospital for further investigations. She had an eeg scan which was not good it was all over the show it was so scary to see what was going on in her little head, she had an mri scan and had to see the eye specialist.
The mri scan showed that her brain was perfect in every way but her corpus callosum was a tiny bit thinner that the average person but they said thats fine, anyone can lead a perfectly normal life like that. The eye specialist said she had tiny pin pricks in the back of her eyes and it will not harm her eye sight. So she was diagnosed with Aicardi Syndrome.
I was devastated the neurologist said that most dont live into their teens. Ive never felt so lost and completely helpless and numb in my life.
Mia is now 15 months old she has seizures every day at least 4 times a day she is very delayed she can only sit, roll, get from the lying down position to sitting. she is not walking, crawling or talking. She sees doctors on a regular basis and sees physiotherapists every week. but there is not much improvement.