Mikey was born at 7:15pm on 20th July 2000 by emergency c-section. Itâ€™s strange the things you remember...I remember thinking itâ€™s the break in Emmerdale. He was rushed to the resus..only needed facial oxygen to get him going for five minutes and I heard him...not a cry, just a noise but it was all a relief.
As the surgeons patched me up...I remember an intense urge and need to see him and hold him. He was placed near me so I could see him and his father got to hold him. We were then taken to the recovery bit. I sooo wanted to hold him but he was taken to SCBU...then told it was because he was a bit cold..nothing serious.
His dad went to see him and bought me back Polaroid pic of Mikey. I went to sleep clutching that picture. Next thing I remembered was I was woken by two doctors to tell me they thought Mikey may have an infection but nothing serious so to get some sleep.
Next morning I waited and waited to be taken to see my baby...I finally was taken up there at half ten. He looked huge in the incubator even though he was 5lb10 born...he was so long!! He looked grey but otherwise OK. Being young and naive I didnâ€™t suspect his condition deteriorating. Day consisted of visitors. I remember feeling resentful at all these people seeing my baby when I couldn't cuddle him.
That evening he really got worse...multi organ failure, had to be put on the ventilator and paralysed and morphine, platelet transfusions...too much to go into .....have tears remembering. At two in the morning it was arranged for him to be christened. Iâ€™m not religious or anything but it seemed a comfort at the time. I was asked if I wanted to hold him....to let him go in my arms...my desire to hold him went from 100% to zero and told them to fight for my little bundle.
So that they did...next few days were critical and after five days he was taken off the ventilator and was breathing for himself...that felt like he had just been born all over again!!! A month later I took him home. He had his trials at SCBU but the important thing was I could take him home!!!
At first I found myself in denial of what had happened...it was like he had only been born a few days before.
I was told to expect some long term problems but not to the extent which I think they knew. I got it into my head that it would be just his liver as it was still degenerating. I thought he may need extra help from physio etc but it didnâ€™t really dawn on me the shocks that were to follow.
When he was six months old I was told he was showing early signs of cerebral palsy. By then we had portage, physio, OT, sensory impairment services etc etc coming in...my house didnâ€™t feel like my own and to some extent my baby didnâ€™t feel like my own...being told what to be doing with him...I just wanted them to let him be a baby...many a time I felt like screaming...eh up..my child is a baby, he is Mikey..leave us alone. But I know they were doing the best they could for him.
Days filled up with these "professionals" and hospital visits to Lincoln, Boston, Sheffield and Nottingham. Looking back, I donâ€™t know how I kept up with it!
The first official diagnosis we got was when he was fourteen months old. He had been for MRI at Sheffield and I knew we were going for the results from the neurologists... He said that Mikey has dystonic tetraplegic athetiod cp with some spasticity. Say it quick and it was still as scary.
Since then, it has been a absolute rollercoaster. Mikey was determined from day one. Problems arose and were dealt with as they did. At one point I was feeding him 15 times a day to have it thrown up all over the wall. Trial and error with meds meant his reflux was put into control and he narrowly escaped a PEG and eventually had his NG tube removed as I was able to feed him his liquid supplements through a bottle.
He has been given many â€œlabelsâ€. One being Sotos syndrome which they found after genetic counselling. He has scoliosis for which he had a nine hour corrective surgery in October 2006. That has been a major improvement for his mobility but unfortunately his lungs haven't recovered and he is on oxygen therapy. His kidneys are a cause for concern too...one just isn't working but the other one is compensating yet showing signs of deterioration. There are questions about Alexanders disease, a degenerative condition but I am sceptical. It is there in the back of my mind mainly because of the sensitive subject of life expectancy...but it is a grey area and I refuse to believe and dwell on the subject. He is living and that is what I have to concentrate on.
More recently he has developed epilepsy (currently uncontrolled) and his lung function has not been great, h'es 24 hour oxygen dependent. he had a feeding tube fitted in 2009 due to choking episodes. Mikey has had many chances to "opt" out but he fights to stay here and keeps smiling, if he ends up crying it is not because of his effort to be happy.