After we brought her home from hospital, I tried for almost a month – every four hours trying to get her to first of all wake up, then feed, then finally giving up and giving her expressed milk in a bottle, which she also wouldn’t suck on, then spending another 40 minutes expressing for the next feed. Finally, just when I was ready to concede defeat (I was exhausted and emotionally drained) she gained enough strength to finally latch on and feed properly. But it wasn’t long until I started to be concerned about her development. She wasn’t responding as well as what I initially thought she would. Georgia wouldn’t turn her head to the left, preferring to lay on her back with her head to the right. At her 8 week checkup the maternal health nurse referred us to a paediatric chiropractor, to have a ‘post birth adjustment’. This was futile, as she was perfectly ok. I also asked the nurse about her eyes, I was concerned that they were turning in. At four months, when they were still turning in, I was again referred on: this time to a consultant paediatrician, who immediately referred us on to an Opthamologist and also to Taralye (an early intervention centre for the hearing impaired) for a hearing test.
After we had seen the Opthamologist at the Royal Children’s Hospital in Melbourne, he ordered an MRI. It was late April and Georgia was 4 months old. I remember that I had to fast her from 3am in the morning to 9:30am – which meant that I had to wake her early for a feed and hope that it would get her through until after the MRI procedure. The vision of her tiny body on that bed and the doctors giving her some gas to keep her still during the MRI is still with me today.
It was a Friday in early May 2005 when I took Georgia to Taralye for her hearing test. Thankfully the audiologist was able to give me the results immediately. Unfortunately, it was not good news. Georgia was severe to profoundly deaf in her left ear, and severely deaf on her right. This news was disturbing, but full of the knowledge that hearing aids and cochlear implants were making a huge difference to children with such a loss, we, in retrospect, took the news quite well. I had a friend that had a son who was profoundly deaf and had cochlear implants – and he seemed to be coping well enough. We knew that with the right early intervention that the future looked ok.
Two days later we received more devastating news; the official diagnosis – Cerebellar & Brainstem Hypoplasia. Georgia’s MRI scan showed that her cerebellum had not developed properly (the cerebellum is shaped like a peanut, and sits at the top of your spinal cord). The left hand side of the cerebellum and Georgia’s brain stem was under-developed – in fact it was half the size of the right side. There was also a small ‘white-matter’ cyst on her brain. It’s amazing that I can remember that I was making our bed when I got the phone call – I remember sitting down trying to make sense of it all and then calling Ken (who was playing golf) and telling him. Obviously I had no idea about the severity and what that mean for us (why else would I tell Ken while he was playing golf!?) The opthamologist told us that the cerebellum controlled balance and movement… and if you imagine that the brain is a computer, then the cerebellum is like the processor. Unfortunately, he didn’t have enough knowledge about what it meant for Georgia, so we were again referred on – this time to a neurologist. We made appointments to see the referring neurologist and neuro-surgeon, to gain more information about what life was going to be like for our precious baby girl. Then we made phone calls to early intervention centres in our area, and life as we knew it was over. Our new life involved physiotherapists, speech therapists, occupational therapists and audiologists. Our baby was not just our precious bundle anymore. Our days were spent with exhausting new equipment, new theories and new exercises to be undertaken.
When you get news such as we did, when you are devastated, a part of you goes into survival mode. You shut off your emotions and just deal with facts and what it is that is needed to help your child. Looking back, those days were a blur. I don’t remember if I cried. I don’t remember if I was angry. I know I immediately got on to the computer and ‘googled’ everything I possibly could. This was such a mistake. Information overload – and not very much of it helpful. The words ‘intellectually disabled, seizures, hearing impared, sensory processing disorder, eating and drinking problems, balance and co-ordination problems etc.., all left us in a state of disbelief and depression. Then, of course, I analysed everything about the pregnancy – did drinking alcohol the night before conception contribute? did I catch an infection? did I exercise enough? was it the stress of my cousins death or the fall that I had at 13 weeks? In the end it was none of these – in fact it was totally unexplained. Just one of those things.
What it all Means:
Nowadays, we know a little bit about what Cerebellar & Brainstem Hypoplasia actually means. It means Cerebral Palsy. But only under the umbrella term, Cerebral Palsy: meaning Cerebral – of the brain – and Palsy – movement disorder. As far as Georgia is concerned, the meaning of the diagnosis means quite little. What it does mean is that the damage to her cerebellum has left her with severe Sensory Integration Dysfunction (SID). SID means that Georgia has great difficulty activating a movement, and then controlling that movement in a meaningful way. Moving against gravity into position to sit up, or stand is very difficult.
Children with sensory disorders can be assisted to improve the feeling of their body in space with specialised sensory input and positioning. Specialised seating with supports to keep
her body straight and standing frames to help her hips develop correctly are all part of her daily life. This equipment is vital if Georgia is to avoid surgery for scolosis and other symptomatic outcomes from not being physically active. Georgia is also non-verbal. This could be due to the SID; or it could be because of the damage to the cerebellum, or a combination of the two; or it could be just an ‘added bonus’ like her hearing impairment, and now the Epilepsy. Overall, it means that Georgia needs (and will require) assistance for all her daily tasks, such as dressing, showering, toileting and eating and most importantly, playing and communicating with family and friends.