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Sams Story Sams story begins over 7 years ago. I was expecting Sam my third child and had no worries about my health. At my 16 week scan it was discovered that he may have a bowel problem as it appeared very bright ( echogenic) and there was some question about his head shape it was lemon shaped. At this point the Drs Thought that he had a bowel problem as my second son was born with a bowel condition so no one was overly worried. I was scanned again at 20 weeks when all the problems were still there plus an added one in that Sam was not growing as he should. I was referred to a specialist unit and at 30 weeks it was decided that Sam needed to be born. While I was in hospital being monitored blood tests were taken and 12 hours before he was born the results were delivered. I was positive to CMV and because of the level of antibodies it was clear that I had caught the infection during early pregnancy.
It was explained that Sam could be born still born or with many problems so we prepared for the worse and hoped for the best.
Sam was born on 25th April 1997 weighing 4lbs and looked fine. He tested positive for CMV during his first few days and his hearing tests showed problems all which pointed to problems. His brain scan also showed scarring in the form of calcium deposits.
He was well for the firs t week of life and we even got to take him home but sadly the virus reactivated and he rapidly became very ill. He came out in the pin prick red spots that are typical of CMV in babies. His lungs, bowel, liver and spleen all were infected and he was predicted not to see his first birthday. I contacted the CMV group and read everything I could on the internet and being a nurse contacted everyone I knew who could help. By this point Sam needed large levels of oxygen and almost daily platelets and blood transfusion as his levels were so low he was in danger of bleeding to death.
It was decided that he should receive an anti viral drug Ganciclovir
This was given through a Hickman line for 6 weeks. This came his body the chance it needed to fight back and despite its side effects (the drug is not indicated for use in babies and does have numerous side effects some of which can be very serious). After 6 months 0n oxygen he was finally able to breath without it and after 4 months at deaths door we were able to take him hope.
Sam is at the worse end of the scale when it comes to the CMV effects he is now 7 yrs old and attends a special school. He has cerebral palsy, hearing impairment, vision problems, epilepsy and asthma. He is confined to a wheelchair and needs 24 hour care and always will as he operates at birth level.
But he has the biggest smile out for everyone a laugh that is really infectious and everyone who comes in contact with him falls for him.
It has been hard work but as I have said Sam is at the worse end of the scale, many children born with CMV have little or no problems.
Where Sam will take us now I don’t know but life didn’t end I work full time take holidays and his brothers attend all the local clubs they want. Plus I have made some very special friends.
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