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My son’s full name is Malcolm Ernest Akehurst, the 4th generation of Akehurst men extending back to: my grandfather; Glen Ernest, through to my father; Barry Charles Ernest, to me; Sean Ernest, to bear the middle name Ernest.
His condition after birth was bleak. The first part I saw of him were his feet in the front seat of my car, he was rushed via ambulance through rush hour traffic to ER at the PLC to be turned and pulled into the world. Within the first hour of his life he had suffered a seizure and we were told that it was unlikely that he would not have partial brain damage, being that he had no oxygen from the placenta or the outside air for approximately 20 minutes.
The first 3 weeks of his life took place exclusively within the walls of the PLC and Foothills hospital NICU. Under close observation where his blood oxygen level and heart rate were constantly monitored and his body fed through IV and oxygen tubes until they could drip breast milk down for fear that his internal organs (specifically his digestive system) wouldn’t function. Everyday that he stayed there we felt helpless and to us there is no worse feeling than knowing that your child is out of your sight, hearing, and touch being so ill. Limited to short visits due to the obligations of 3 other children, work, and the myriad other things that consume most peoples daily awake hours, we had to accustom ourselves to separation at a time when all we wanted to do was be there and hold him. To see with our eyes that he was cared for as every innocent baby deserves at a time of deeper vulnerability and dependence that most will ever know or experience. To be there to hear him draw breath (laboured and supplemented with oxygen). To touch him and wish that you could channel all that pain and suffering from him away. As time interminably passed, tests revealed a slow forming picture of his situation.
His first MRI revealed two spots on his brain that had bled during his birth trauma and fluid had collected. His second EEG revealed no further seizure activity. That is the manner of news delivered with Malcolm, the negative and positive, flung at us to leave a feeling neither optimistic nor pessimistic but somewhere in a confused middle. Once he came home, he remained on oxygen for another 3 months. Weak and unable to move much, his apparent fragility magnified with every poor result, his unknown strength slowly revealed with passing time, we held our breath. Then the hardest/happiest day of our life came.
Due to an improperly functioning valve, a build up of spinal fluid was occurring around his brain causing hydro encephalitis. The neurosurgeon’s recommendation to install a shunt to relieve the pressure was adopted and preformed in November 2009. Our fear of brain surgery versus the results of hydro encephalitis was the most difficult decision we’d ever had to make. A call we believe has forever changed the quality of his life and has eternally indebted us to the many doctors, nurses, therapists, friends and family that had observed, advised, supported, operated, healed, coached, and continue to be a large part of Malcolm’s growth and development.
The path for him is still an uphill climb but if the past is any indication, he has been gifted with the strength and intelligence to be an independent, fully functioning person. The support of the Sarah Faith Hogan Memorial Foundation will help alleviate the inevitable financial costs associated with raising a child with particular need as Malcolm has and we are so very grateful to receive the funds.
Yours with Grateful Hearts,
Sean and Melanie Akehurst
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