The Story begins ....................................
On 20th July 2010 I was born by emergency section into a family of 2 brothers and a Mummy and Daddy. I was perfectly formed and gorgeous. A "little Princess" is what I would be known as. Little did everyone know that from that day on our new little family life would never be the same again.
On day 2 of my life I was found to have failed my newborn hearing screening test. Build up of fluid could be to blame is what my mummy was told and re-test was organised for 2 weeks.
I was extremely unsettled at home, cried most of the time and didn't sleep. I was noticed by family and friends to be quite noisy at times when I breathed. I also made a strange snorting sound from time to time. Examination from Health Visitor revealed also that I have a very marked indent in my chest. This can be quite common and no major concerns were voiced at this time.
Re-Test of newborn screening test showed it was "incomplete". Mummy said she knew then that there was something just not right. I was referred onto the Sensory Centre for further testing.
As the weeks went by my feeding became a major issue with my mum, as in I sucking was difficult for me and I choked frequently on my milk. My weight decreased and gradually I began sliding down my scale. I became more unsettled, I cried almost constantly and never slept.
It was weeks later that my parents were told I had some hearing loss but to what degree they still weren't sure and further tests were needed to confirm.
My weight was proving great concern to medical staff, my snorting noise had become worse, my breathing now was extremely noisy. In addition to this, I was what you could call "floppy", my head control was very poor.
In September I referred to hospital where it was thought I might have something called Retrognathia. I was to be referred to more Health Professionals who would show my mummy how to feed me using different techniques and also different feeding bottles. Mummy said she always doubted this was what was wrong with me as she always felt there was "something else".
Despite new feeding techniques, I continued to lose weight. I had now developed what they said was Reflux and vomiting had become a huge issue now.
On the 1st October 2010 I was admitted to hospital again for more testing.
2 weeks later I returned to hospital where I then admitted for 2 days then transferred to Yorkhill Hospital. I had now developed breathing problems while I slept, they called it sleep apnoea.
On arrival at Yorkhill I was seen by the ENT Team who diagnosed me with a condition called Laryngomalacia. The following day I underwent surgery for this called Supraglottiplasty. After about a week I was allowed home. My mummy and daddy were given Resus training and I had an Apnoea monitor attached. I left though with a cough, but this was thought to come from the surgery.
Within only a few days of being home I was readmitted to Yorkhill. I was thought to have a virus and was observed in hospital for few days. As symptoms did not resolve I was taken back to theatre for my 2nd Supraglottiplasty. After this operation I did not recover as quickly. I remained in ITU overnight. My coughing became worse and it was thought now to be Reflux related. A few nights later I went into respiratory distress. Mummy said it was so frightening to watch me struggle for breath and then have doctors take me back to ITU. Daddy was phoned at 4am to come through as the doctors did not know what the next few hours would bring. After tests in ITU I was found to be positive for Whooping Cough. I was commenced on antibiotics and put into isolation. After around 5 weeks in hospital I was allowed home.
Thing should have improved but didn't, my breathing became worse, my feeding extremely poor, failure to thrive, I was floppy all over, head control was poor, reflux was worse than ever. It was around this time that my mummy and daddy had found the lump in my spine.
I was referred back to hospital and it was then that we were told there could be a chance that I have a "syndrome", which one no one knew at that time.
I was diagnosed in this time as having hearing loss and I have hearing aids fitted. I had a teacher for the deaf come to the house every week to help mummy and me understand what I could hear and what we could do to make like more easier for me having a hearing problem.
I failed to be able to sit up at around 7 months, I had no core stability. Mummy says she knew deep down there was something seriously wrong with me but just didn't want to admit to it and as long as she didn't say anything out loud then maybe it really would be ok.
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