Rachel Wright, mother to now 11-year-old Sam, tells her story of having a blind child with cerebral palsy and life-limiting epilepsy
WORDS CHRISTEL GERALYN GOMES
In the wee hours of the night, Rachel awoke feeling uneasy. She was due the next day but a nagging feeling tugged at her. For no reason at all, she found herself wondering if there was something wrong with the baby.
Stirring, her husband Tim asked sleepily, “What’s the matter?”
“The baby isn’t moving,” she said.
“It was only a few hours ago you were complaining your hot chocolate was being kicked off your bump,” came Tim’s reply.
The next day, Rachel was wheeled into the operating theatre for a caesarean. Her obstetrician and midwives chattered and the atmosphere was relaxed and unhurried.
Rachel describes in her book, The Skies I’m Under: The rain and shine of parenting a child with complex disabilities, what happens next.
“Just after 2pm on Wednesday 12th October 2005, a slimy, limp baby was removed from my womb with the exclamation from the delivering doctor that we had a boy. Tim and I smiled at each other.
“A boy,” we exclaimed in unison. Within a few moments, however, I became concerned that I couldn’t hear my son cry and I sent Tim to investigate. As he took the long slow steps back across the theatre he considered his words and gently lowered his head next to mine.
“What’s wrong? What going on?” I implored.
“He isn’t breathing.” Tim’s gaze penetrated my heart. “The doctors are trying to resuscitate him now.” A kiss on my forehead sealed his words.
“Go back and watch over him. Then tell me what’s happening.”
Suddenly my mind and spirit were as numb and disjointed as my legs.
Tim retraced his steps, passing familiar equipment and suddenly sullen faces. The anaesthetist behind me touched my shoulder and I sobbed. Although I was unable to feel most of my body, the pain was overwhelming.
Medical staff started buzzing around and after several minutes of Tim going backwards and forwards, I got a glimpse of the top of my son’s head. I was encouraged to give it a quick kiss as my faceless baby was whisked off to the neonatal intensive care unit to be ventilated.
Then the sobbing really began, interrupting the uncomfortable hush that engulfed the theatre. The flood of my tears hit like a tsunami and in an instant, the landscape of my world became unrecognisable.”
Rachel’s doctor, Dr Mary Rutherford, of Hammersmith Hospital explained that Sam had severe and extensive brain damage to both his white and grey matter and that “numerous insults occurred in the time leading up to Sam’s birth and then again at delivery”.
Guilt hit Rachel hard as she blamed herself; “How had I carried on singing, doing chores and going about my daily life, when the fragile being inside me was suffering repeated insults? What kind of mother was I?”
Sam was diagnosed with cerebral palsy and life-limiting epilepsy. He is registered blind and is, till today, fed with a tube (PEG fed) that goes into his stomach because he cannot swallow well and aspirates on food and drink.
Tim, a doctor, and Rachel, a nurse, understood the myriad of complications his diagnosis would bring to all their lives. But at that point, sitting there listening to her doctor give her the news, Rachel was nothing more than a mother, whose heart bled profusely for her son.
Blindness, Physical Disabilities, Cerebral Palsy and Epilepsy
“The general term for the clinical expression of brain damage is cerebral palsy but it expresses itself in many ways,” says Rachel. “Sam’s CP is severe and complex. Both his epilepsy and cortical blindness are related to his brain damage. Sam’s eyes work normally but the brain does not understand the messages it is receiving,” she adds.
Epilepsy is defined as a neurological disorder causing convulsions, sudden fits, or fainting episodes. Rachel explains that a brain with lesions and damage is more likely to fire off uncoordinated and repetitive signals that cause the aforementioned symptoms. “Sam had his first fit at nine months. When he was younger, his seizures became more life threatening and unpredictable. Sam doesn’t have frequent fits but all the seizures he has had have required hospitalisation because they are hard to stop. Some have lasted for two hours and he has needed to be ventilated on in the ICU.”
Besides being blind and having epilepsy, Sam also can’t sit, roll, stand or walk because his brain damage affected his limbs and trunk. “But, Sam has the most infectious, dirty laugh,” says Rachel. “He loves music and swimming. He knows what he wants and will let everyone in earshot know when he isn’t getting it by screaming and shouting. A full blown tantrum can be stopped with two notes of a song, though,” she adds.
Adjusting to Life with Sam
Having Sam in their lives understandably required massive changes. “Life with Sam is hard but with children of complex needs, the highs are higher and the lows are lower. We’ve had to flow and adjust every day. In some ways you never come to terms with it, in others, it becomes a new normal. Sam has taught us how interdependence is more important than independence, how love is limitless and how our worth is not tied to what we can and cannot do. Sam creates a lot of love around him and changes people for the better,” says Rachel.
Rachel’s day with her boys begins at about 6.30am; “Sam has to be hoisted onto the toilet straight away and given his morning medications. He has over 20 syringes of medicine at 8 different times in a 24-hour period. He has 4 daytime milk feeds through his stomach tube and water pumped in at night. He has to be toileted every two to three hours.”
“Our days are littered with physically demanding work, as there is always another thing to do. Sam wakes through the night because he needs to be turned. Care is needed 24 hours a day, 365 days a year, but we work hard to make sure it isn’t all about care but enjoying life and doing other things as a family – we are in the business of making memories and making every day count.”
Today, Sam goes to a special school full-time and also has therapy at home. They have a ceiling track hoist in Sam’s bedroom which helps them lift him, but are hoping to raise money for one in the living room too as they will not always be able to carry Sam.
Despite it all, Rachel is remarkably positive. “A hard life doesn’t make a bad life. It is often the most difficult roads that lead to the most beautiful destinations.”