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16 day old son diagnosed with severe CP - bleak prognosis
My darling son has been diagnosed with severe CP following a brain insult during pregnancy. He suffered some seizures following his birth and was given doses of Phenobarb to control this. He was taken off the PB over a week ago to allow a clearer EEG to be done following an initial one at 4 days old. He has also had an MRI done and following the results we have been told that the Radiographer has never in his career seen such severe damage to the brain. We have been told that the prognosis is very bleak - and have been asked to consider a Do Not Resuscitate order. He is currently showing no signs or symptoms of problems. He has controlled movements, has his eyes open, reacts to sound and although is being tube fed - he manages to suck on his dummy very well. We are told he will deteriorate over the coming weeks but it is very hard to accept that they are right when you are spending time with him and seeing nothing to convince you that they are right. We have no idea how to deal with this, where to turn for advice or whether to accept that they are the professionals who know and we must be guided. I just feel so helpless and want to do everything I can for my baby boy. I am ready for the work that needs to be done, I just dont want him to suffer in anyway - just so that I can hold onto my baby boy. Advice needed.
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