GEORGA'S STORY
After a normal pregnancy, Georga Rose was born on 14th April, 1998, the Tuesday after Easter. I had a spontaneous birth and she was delivered at 36 weeks. She weighed in at 6lb 2oz and had normal apgar results. I tried unsuccessfully to breastfeed Georga, she was unable to latch on to my small nipples so this wasn't to be, so after 8 days of expressing milk, trying all sorts of different ways to get her to suck and expressing over 8 days I eventually gave up and decided to bottle feed her. We went home a few days after that.
Georga was, and still is, the placid baby that cried a bit, especially if hungry or she had wind but apart from that she was very easy to look after. People used to tell me how "lucky" I was that she slept through the night so early and didn't really demand for anything, attention, toys, nothing.
She was a "floppy" baby but being my first I didn't recognise it as being a problem. My two cousins both had given birth around the same time so I had young ones around me but didn't worry about her development too much because all children develop at different rates.
By the time she was seven months old she started to "lag" behind, and it became more noticeable as time went on especially when comparing other children at my new mums group. Out of seven children Georga was the only one still on her back, not crawling or sitting unsupported, not reaching for toys, not finger feeding and still very placid and content all the time.
At the end of November 1998, my husband Jim and myself went to a Sunday wedding up at Bridgewater and had a wonderful day. The following morning Jim went to work and I brought Georga into bed with me to have a morning cuddle and to give her her bottle. She had a funny turn? Seizure? Whatever you want to call it, where she went quite still, her breathing went shallow and she stared ahead. I tried to "shake" her out of it (very mildly of course) and after, what seemed an eternity, maybe 20 seconds she was back with me. I gave Georga her bottle and she fell asleep for about ½ hour. When Georga awoke she had another funny turn but this time her lips actually turned blue. I again tried to stimulate her to come out of it and eventually she did.
I got dressed, packed a bag and took her straight into the Women's and Children's Hospital in Adelaide. We waited in Emergency for a while and eventually ended up on a ward. That afternoon she actually had another turn and the nurse in charge of the ward witnessed it. Which was good for me, for someone else to see what had happened and to be able to relay it to the paediatrician.
We ended up being in hospital for 5 days. Georga had lots of blood tests, an EEG and an ECG looking to see if there was anything wrong. The paediatrician also picked up on her development delay, both physically (her floppiness) and mentally.
Over the next two months (December and January) we ended up spending approximately 25 days at the Womens & Childrens. Georga would have a run of "turns", I would page the paediatrician and let him know what was happening and we would end up going to hospital. I think around this time Georga also had CT scans an MRI and a spinal tap to test for other things.
In the January we finally received the chromosome results and was informed that Georga had and extra X chromosome. One of the nurses on the ward went to the hospital library for me and found some information about 47XXX and based on this information I was not too concerned about her extra chromosome. We ended up coming home, taking phenobarbitone (a common anti-epileptic drug) and had a referral to see a paediatric neurologist.
Since January 1999 Georga has been on numerous epileptic drugs. The current medication she is on and has been for the last 12 months seems to be doing a "not too bad" job. Her seizures have been reduced to approximately 6-8 per month instead of the usual average of 25. She has also been diagnosed as having "myoclonic" seizures. She sees the neurologist every 4 months and if there is a significant change in her seizures, be it the type of seizure or quantity of them, I phone him and we increase her medication. Her neurologist also thinks that she may have Rett Syndrome. We have had blood tests done and she doesn't have the "classic" gene, so this will go on the back burner for now.
Apart from this though, there was also the developmental problem. Not knowing where to go or what to do, I happened to tell the CAYH nurse about Georga's extra X chromosome and she referred me to the Downs Syndrome Association because of the chromosomal disorder. Georga started in an Early Intervention Group by the time she was 1. Through the Downs Syndrome Association, we were also referred to IDSC (Intellectual Disabilities Services Council) receiving Physiotherapy, Occupational Therapy and a small amount of Speech Therapy.
At about 15months of age I decided that I wanted Georga to "get in the water". I new that going to a "normal" swimming session was out of the question so through her physio we were able to link up with a Hydrotherapy group at Felixstow, just down the round from us, which was run by the Crippled Children's Association.
Georga has been attending "Hydro" now for 2 ½ years and has no qualms about getting her face wet or having water tipped over her. When we first started going she was the only child that would fall asleep in the middle of songs in the water!
Georga is now 3 ¾ years old. She can sit unsupported and has been able to since about the start of this year. Though I still put a U-pillow behind her incase she topples off balance. She still doesn't put her arms out to stop herself from falling. She reaches with her right hand for toys and will stretch and make an effort to reach them by using her left hand to prop herself with. Georga doesn't talk at all but over the last few months has started to do a lot of vocalising - mainly mmmmmm noises. She will cry but her cry is more of a whimper than a scream and this happens when she is hurt or if she is in an environment that she is not comfortable with. She doesn't laugh or smile very often, so it is a privilege if she does. Georga still doesn't chew food. Her food is mashed with a fork but she is able to eat quite a variety of things as long as they are not too big to get caught in her throat. She LOVES food especially ice-cream and
chocolate!! How normal is that!
Georga probably won't walk and if we are lucky she may be able to take weight through her legs momentarily. She doesn't finger feed or feed herself with a spoon and also needs someone to give her drinks. She uses a spout cup but only has approximately 30mls of nectar type liquid per day. Most of her fluid is through her food.
Georga has ceased Early Intervention but now attends Pre-Entry one day a week, she also attends the local Child Care Centre two days a weeks and still does her Hydrotherapy. She is such a busy little girl.
As for her future or how far she will develop, nobody can give me any answers. Georga is still "undiagnosed" as to why she is like she is. We take one day at a time and any advancement is wonderful. I love her to pieces and can't give her enough kisses and cuddles. She loves songs and looks at you so intently that I am sure that she understands more than people give her credit for. Unfortunately people don't give Georga enough time or a chance for her to respond to them. Her little brother Jack is wonderful with her. He gives her lots of kisses and cuddles and loves to help get her toys for her or help push her wheelchair. Soon Georga will be a big sister again to twins!
We love her and can't imagine life without her. She is our "special" little girl and has taught me lots of things about myself, other people and the society we live in. She has won lots of people's hearts along the way and will only continue to as each day passes.
Gail Ranaldo
Click on one of the following links to read about these children and their families.
Jarod's Story A 3 year old with epilepsy, cerebral palsy and global developmental delay.
Samuel now 2 has a vision impairment and associated delays.
Georga has started kindy now. She was a floppy baby at birth and has recently started having seizures.
Matthew is 3 and enjoys life. His development has improved incredibly since the early days.
Izabella has dispraxia. Find out her parents worries, fears and hopes.
A grandparent shares his wishes, joys and fears with respect to his disabled grandson.