I was pregnant and over the moon. I had no sickness and felt brilliant. The scans were fine, I was keeping fit by continuing to cycle to work up until I was about 7 months pregnant and worked until the week before my due date. Debbieverything seemed perfect; all we were waiting for was a perfect baby.
On 10th October 2002, I went into labour. I wont bore you with all of the gory details, but as a result of an emergency caesarean by anaesthetic, we were suddenly the proud owners of a little baby girl, we had already chosen a name, Debbie. I was in a pretty bad way and Debbie was whisked off to the Special Care Unit. I didn’t see her for some 6 hours and only then it was for a few minutes, as I felt so rough. Shortly after, Hubby noticed Debbie’s foot twitching, he mentioned this to a nurse and then Doctors seemed to take over. Things were not good, she was fitting. Debbie was deteriorating. Hubby was allowed to stay with me that night. I shall never forget the moment; when at 03.45am a Doctor came into see us. He started to talk; I knew this line being married to a policeman when they try to prepare you for something bad. I remember saying to him ‘Cut the crap out is she dead’ No, but she was being transferred to University College Hospital in London to an Intensive Care Neonatal Unit. I didn’t even say good-bye to her before she left, Hubby saw her off in the Incubator, with just one small teddy with her. I was detached from her and she didn’t seem to be mine. Everything was so unreal. The Staff tried to persuade me to be transferred to the same hospital but I was in my own world trying to recover from the operation and didn’t want to leave what I knew. I have to live with that decision for the rest of my life.
Hubby went up to sit with her each day and brought back a photo for me, of this little girl looking like a voodoo doll with so many wires and needles attached to her. He was trying to prepare me. Something inside me said that I had to do something to try and help her so I managed to express some milk and Hubby became the Milkman.
After 4 days of fitting Hubby came back to tell me that there were no more drugs they could give to Debbie and all we could do was to sit and wait. How many times you just pray for a miracle I just lost count. But there was, when Hubby went the following day they had burnt out but Debbie was still drugged up and time would only tell as to what her disabilities would be.
I eventually went to see her when she was 5 days old. I never knew how you could just sit and look at a baby for hours on end, but you do. Debbie came home after 2 weeks.
In my mind I thought Debbie was still going to be normal. I still did not accept that she had any brain damage. Then the appointments started and do not seemed to have stopped. Going from one to another, your life evolves around them. We saw one doctor and she suggested an MRI when Debbie was about 4 months to see how extensive the brain damage was, we agreed to this. I was still in denial that Debbie had problems. The results came back and the damage was fairly extensive.
We then saw her consultant in London and some words were mentioned to us “Cerebral Palsy”, we were in shock and wondered what this term meant. You then start to do all of the research on the Internet and try to find out what this means. You are still dismissive but gradually it begins to all sink in.
In April 2003 the physio asked me to take Debbie for an assessment at the Ashtead Clinic to see if Debbie would benefit from something called JOG. I didn’t need to go to any special group with Debbie surely not, but they did recommend it and it changed our lives.
I don’t think any of us will forget the first time we go to JOG, with that sense of over whelming emotions. I nearly cried in every group and just wondered how I kept my composure but did, until I left and then just cried. Would I ever go back, but you do for the sake of your child, and one mum I will never forget will be S who made me feel so welcome, yet her daughter, was terminally ill, just puts it all into prospective.
I look back now and just wonder how I would have coped with out JOG. I wouldn’t have. The support of everyone, we are all in the same boat for we all have children who are special to each and every one of us. You dream of having this “perfect normal child” but I do for I have a beautiful daughter who I am proud of. She has defied all odds and has walked; she is unique for you do not normally have a child where the arms are worse than the legs. She is determined and so are all of us for we are all striving to make sure each and every one of them achieve their potential. There are days when we are down and days when you need a shoulder to cry on after bad news from your child’s consultant, but we all now we could ring one another. I hope that I am a better person for what has happened, well I sure I am.
Debbie left in February this year, to go to Woodlands, this was a natural progression for her and she is in the best place for her. I now have to accept that she will be there for all of her school life and face reality that she will be dependant upon me for the rest of my life. As I build upon my experiences I hope I will be able to share those through SCAMMPS for people who are just joining and who will do so in the forthcoming years.
I have just been to check Debbie, as she is asleep, she looks so contented. Tomorrow is another day and as she gives me one of her smiles, my heart will melt once more……