The months and then weeks leading up to the birth of a new baby are filled with anticipation and excitement. A wonderful little person adding a new dimension to the family. Images of a little guy kicking a soccer ball around, scoring a goal at his first under fives soccer match, first to cross the finish line at the school athletics carnival. Or a pink and white little girl dancing the lead ballerina in her first school play. You never think, in the weeks leading up to the birth, that your baby would be physically or mentally unable to do these things. Your baby is born looking perfect in every detail, a clean bill of health from paediatricians, all is well and mother and baby go home, anticipating a wonderful life together. But how do you cope if after a few months or even years, it is discovered that your child has a major health problem. Happiness turns to guilt. Questions arise like “Did I do something wrong when I was pregnant”? Is the gynaecologist to blame”? “What does the future hold”?
My beautiful son was diagnosed at the age of 23 months as being ‘brain damaged’. The only indication I had that something wasn’t ‘quite right’ was the way he crawled or in fact didn’t crawl. His way of getting around before he could walk was to sit on his bottom, tuck his right leg underneath him and propel himself forward using his left leg only. Even this didn’t set off any alarm bells, hadn’t I seen other babies move this way? As the months passed I had to face the possibility that something was wrong as he wasn’t attempting to stand up and walk. A well meaning neighbour, who worked with disabled children, advised me to take him to an orthopaedic specialist. He examined him and told me he was structurally sound and only too lazy to attempt to walk but maybe I should have him examined by a neurologist. I made an appointment with a neurologist and after a ten minute assessment the diagnosis was delivered with the ‘subtlety of a sledge hammer’. “Your child is brain damaged and has cerebral palsy, bring him back to the hospital when he is three years old and we will enrol him in a physiotherapy program.”
My husband, who was 12 years older than me, had three boys from a previous marriage and had not really wanted another child, let alone a child with a disability.
I therefore felt the problem was mine alone to solve. My reaction on hearing the diagnosis was denial, my son was such a beautiful baby, and my only thoughts were that my son was going to be normal. A month after diagnosis he suffered a major seizure. I rode in the ambulance with him feeling incredibly calm and convinced that he was going to be alright. Only when the paramedic covered his little face with an oxygen mask and monitored his heart rate and pulse did I have a moment of doubt. I still remember the hospital registrar turning to me after admitting my son into hospital with the question “Are you always this calm”? My reply was “Would it have helped my son if I had been hysterical and fallen to pieces”? This would come later when my son recovered from the seizure and appeared to be normal again. Would there have been further brain damage? No-one could tell me and the attending neurologist admitted that there was still so much they did not know about brain function. A brain scan revealed a cyst containing dead brain cells, presumably killed due to lack of oxygen either during pregnancy or at birth. Research has still not discovered a definite cause of cerebral palsy. Some research indicates that sperm from an older man can be the cause, much the same as older women are more prone to having Downes Syndrome babies, but mainly the damage is attributed to starvation of oxygen to the brain. Cerebral palsy is not a progressive neurological disease but a ‘one off’ killing of brain cells and as with a stroke the severity and damage varies greatly from patient to patient.
My son did eventually walk and at this stage the physical damage became very obvious. His right leg would drag along the ground as he was unable to lift his foot and his right arm was held up in the air, the brain’s way of trying to balance the body. Would physiotherapy alone be the answer? The mainstream medical profession thought so but I was not convinced. Fate stepped in one night whilst I was attending a charity ball to raise money for the spastic centre. Whilst talking to a physiotherapist from the centre, she urged me to take my son to them for assessment. “But he’s not in a wheelchair, I protested”. She convinced me it was the right thing to do and following her advice was the best thing I could have done for my son. I totally believe that if he had been treated by the conventional mainstream medical channels, he would be in a wheelchair today. An initial assessment at the spastic centre gave me hope that they could help my son develop into a normal walking, talking child. What an amazing team of dedicated therapists. For five years they worked with my son giving him physiotherapy, occupational therapy, speech therapy, hydrotherapy, if there was a form of therapy, my son had it! His little legs were put in plasters for twelve months, the ankle on the right leg being set in such a way that the Achilles tendon would be stretched to facilitate normal movement in his foot. The heavy plasters on his legs helped to re-educate the brain to use the pelvis correctly. The right hip, which had been rotated backwards, slowly returned to a normal position. The right arm was no longer required for balance so slowly came down to the side of his body. My son improved so much that I was able to enrol him in a mainstream primary school. The school arranged for a special education teacher to give him extra tutoring. The rest is history, as they say. He was accepted into a Marist High School and on graduation day I was the proudest mother on earth when he was awarded the prestigious ‘Headmaster’s Award’. He obtained a university degree, amazing as I was told by specialists when he was young that he would never be able to write an essay or pass an examination in school. At one stage doctors told me he would never walk; he has successfully run the City to Surf in Sydney, jogs regularly and plays golf like a champion!
I always encouraged my son to keep trying, maybe I was a little hard on him at times but together we achieved what some told us was impossible. I never felt like giving up because it was too hard and my dream of my son leading a normal life has been fulfilled.