This is an anonymous blog post
At the age of 18 I found out I was pregnant. I had been dating my boyfriend for five months and although it was a total shock, we came around to the idea.
He then decided he didn’t want me or our baby and left me for someone else. I decided that I could not do it alone, I was scared of becoming a mum and the thought of being a single mum terrified me.
A termination was what I thought would be the best choice, that was until I found out I was already nineteen weeks pregnant. There was no option, I would have to get used to being pregnant and becoming a mum as it was happening whether I liked it or not.
It has to be said that my mother was amazing, she supported me and even helped to finance the baby. She went crazy on shopping sprees and we soon had everything needed for the baby. She even paid for me to have a 4D scan where we found out I was having a little girl.
I finally gave birth to a very beautiful little girl who I named Abigail.
Back at home I soon settled into the new routine.
One morning when I was changing her nappy I noticed something unusual. Her arm looked funny, like it was jerking.
My heart stopped, something was wrong
I screamed for my mum who came running through and she picked her up and held her close.
She was smiling and happy but I was worried, I took her to see the doctor that day. He reassured me that nothing was wrong and could only guess that the water I had been using to wash her down was too cool and this had stunned her reflexes.
A week later I took Abigail swimming, she loved the water.
This is when she suffered from her first seizure.
A week later she suffered another and back to the hospital we went.
The nightmare was about to begin for us.
She was sent for an EEG scan and an MRI scan. The scans confirmed that she had abnormal electrical activity in the brain .
A diagnosis of epilepsy was given. My 8 week old baby had epilepsy.
She was prescribed Sodium Valporate (Epilim) but she had severe seizures.
She was in and out of hospital but was still such a happy little thing.
She was later diagnosed with a very rare form of epilepsy known as Severe Myoclonic Epilepsy of Infancy (SMEI or Dravets syndrome.)
Her first birthday arrived and she spent her special day having seizures.
She was incubated on the paediatric intensive care unit (PICU) where she stayed for three days.
Abigail had gone and was replaced by a zombie.
I never did find out if she had become brain damaged, but I suspect she did.
She had very weak muscle control and struggled to pull herself up or even crawl.
Severe Myoclonic Epilepsy had stolen my baby
On the 17th of December 2009 Abigail was found cold and not breathing.
I gently nudged her, telling her to wake up.
I rolled her over, willing her to move, to open her eyes.
I then picked her up, she was solid and heavy and dead.
I dropped her and I still remember that sound
I don’t remember much else from that day but my father arrived and raced to help Abigail, he phoned 999 but she was already gone.
We had to go to the police station, the day is hazy to me, I was on autopilot.
The postmortem revealed that my baby had died of Sudden Unexpected Death of Epilepsy.
Severe Myoclonic Epilepsy killed my baby
We laid her tiny pink coffin in the ground, close to her 2nd birthday.
I could not hold it together, I broke into a thousand pieces.
My partner and I separated, I could not bare to be anyone if I couldn’t be with my baby.
My heart was ripped out the day she died and I miss her daily.
I have been for counselling but the pain is still raw. I find it difficult yo visit her grave.
She was 23 months old when she died.
My baby became an angel, grew wings and flew away.
She left a heartbroken mother behind who misses her like crazy and could never describe the pain she feels.
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