My beautiful baby girl and second child was born on a lovely summers day in July, 10 days overdue and not wanting to be born, the midwife decided to take me into hospital and induce me – not nice.

After a very painful labour, Alexandra decided to come into this world in a rush, unfortunately a student nurse had not examined me and even though I said I wanted to push decided to get me into the birthing room rather than letting me give birth in the side room they had put me in.  No examination was done before transferring me and unfortunately our beautiful girl had the cord around her neck and was born not breathing.

I can still remember these moments so clearly like it was yesterday, she was so tiny, just 6lbs with jet black hair but no sign of life, no crying, just a stillness in the room.  Doctors and nurses working together to get her to breathe and eventually she did take a breath.  Alex was put into an incubator and taken to the special baby care unit on a life support machine.

I was finally taken up to visit Alexandra some hours later and found it weird that my baby had a dark cover over her incubator, I was informed this was because the light was making her agitated and they had given her a sedative to calm her.  This little person was making no noise but her face was all scrunched up as if in pain and I remember crying buckets.  I was not allowed to hold her but was allowed to hold her tiny hand in mine, thinking I have carried you for 9 months and finally when I give birth you are so poorly – is this my fault?

I had no need to stay in hospital, so 48 hours after I had given birth I came home so that I could be with Daniel as he needed me.  Dan could not understand that I did not bring a baby home with me, at just over two years old he was struggling to comprehend that his baby sister was still in hospital, poorly – how do you explain to a young child what is happening??

At 5 days old Alexandra developed swelling on the brain and had to have surgery to release the pressure building up, she had also started to have seizures each one stopping her heart, only for her to be brought back to life each time.  My god she went through hell and back, fuck how can someone so tiny endure suffer so much?  I visited Alex every day whilst trying to maintain some form of existence with Daniel and my husband.

At 6 weeks old, Alexandra was allowed home for the day, this was to ensure that we could ‘cope’ with the drugs she required daily, manage being a Mum to Dan, and just I suppose surviving.  We did cope and Alexandra was finally allowed home the following weekend.

Having a baby with no disabilities can be challenging, juggling mummy time for both children however when one requires 24 hour care constantly, I can tell you I thought I was going to have a breakdown trying to keep it all together.  The husband was a man that did not cope well with having a daughter with disabilities and his way of coping was to work long hours and then come home and have a beer.  Me, god I hated what was happening to us as a family, hated that my baby girl was not developing like other friends babies around me, and I was guilty of having given birth to a baby with profound disabilities….. if only I had known what was going to come and slap me in the face in the future.

Alexandra developed very slowly, partially paralysed with cerebral palsy, severe epilepsy and up to 20 seizures daily she was however so beautiful with the palest skin and jet black hair, a perfect rosebud mouth and the blackest eyes that looked occasionally into your soul.  No head control and very floppy, I decided one day to put her into a swing that hung from the door, and in that one instance she lifted her head and I have the perfect picture of her, in fact its the only picture I have of her.

At 9 months old, it was Daniel’s third birthday and I decided to have a small party, Alexandra was in her baby chair and she seemed very alert on this day and during the madness of having three year olds running around our small flat, she smiled!! Oh my god I cannot tell you the emotions that ran through me, I cried out did anyone else see her do this, was it wind?  I had waited 9 months for her to respond to us and she chose Dan’s birthday to do this.

On the 10th May I woke early to find Alexandra having another seizure, only this time it did not stop, we got a neighbour to sit with Dan and we then took Alex to the hospital.  On arrival she was seen immediately in the children’s ward as we were there so often we did not need to go via A&E.  Her consultant who she had been seeing regularly could not stop the seizure and she was then put into an induced coma.  We were then asked a number of questions and one of them was did we want to continue with her drugs keeping her alive or did we want to see whether she could come out of the seizure on her own?

What a fucking question to ask!!

The hardest decision ever, but we chose to bring her out of the coma and to see if she would cope.

She didn’t…..

At 3.10pm 10th May, on a glorious sunny day my beautiful baby girl died peacefully in my arms, finally free of the terrible pain she was enduring on a daily basis.  I felt incredibly guilty, I felt relief, I felt bereft, and wanted to scream at the terrible injustice my baby girl had been born with cerebral palsy and epilepsy.  The ache in my heart is still with me all these years later and whether you have suffered a miscarriage, a stillbirth or a child that has grown and then died the pain is still the same, unbearable.

A neighbour sent a bereavement card and these words were inside:

A tiny flower, lent not given, to bud on earth but bloom in heaven. 

I have remembered these words from the day I was given the card.  I am not sure of heaven, hell or whatever but these few short words gave me great comfort and still do.

We will never know if she had Fragile X Syndrome