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David in his new Wheelchair - March 2007
David was born on the 12th of June 1990, with no complications and seemed to develop normally until at about 9 months of age he was diagnosed with Infantile Spasms, a severe form of epilepsy which left him with extreme developmental delay
At about 2 years old he was admitted to The Royal Children's Hospital intensive care unit in Melbourne 3 times with what we thought was asthma, until we found that one of his epilepsy medications was shutting down his respiratory system. After this med. was stopped, his asthma disappeared and he continued on in 'his' normal way for a few years. His development remained at about baby stage, no speech, wearing nappies, and being spoon fed. He did manage to learn to walk a little, but not very well and he would often have a seizure and fall, literally, flat on his face. Because of these falls, we bought him a cricket helmet with a face guard to prevent another broken nose
When he was 7 years old, he had a fall and had a CT scan to check for any internal bleeding. There was none, but they found 4 cerebral haemangiomas ( like strawberry birth-marks). The neurosurgeon told us they were not causing any immediate problems, but we should come back in 2 years to check on them. At about this time he began to stop walking by himself and needed help to get around
Two years later he went for another scan and we found that one of the haemangiomas had grown and was causing hydrocephalus (fluid on the brain) which would kill him in 1 or 2 years if not operated on. The catch was that the operation would probably leave him with hormonal problems because of the proximity to the hypothalamus. Because it was major brain surgery, there was also a chance that David might not survive the operation.
We decided that he should at least be given the chance to fight, so he had the surgery in April 1999 and the operation went very well. However, the surgeon's worries about the hypothalamus were confirmed, as David developed Diabetes Insipidus, in which the kidneys continually filter water from the bloodstream and generate excessive amounts of urine. He is now on medication to correct this problem, but it is a difficult juggling act, keeping his input and output balanced
Because of his hormonal problems, he also will not eat or drink, as he doesn't feel hungry or thirsty, so in August 1999 he was given a gastrostomy tube which feeds (liquid) food directly into his stomach. For the next few months he managed to avoid hospital visits as his fluid balance remained good and we began to feel that he had stabilised.
About Feb. 2000 he began to have problems again with fluid balance and also with constipation, causing a few more visits to Melbourne's Royal Children's Hospital. In early June he was hospitalised again with suspected pneumonia.
He spent most of the next 3 months in hospital with severe chest infections and
fluid problems, until, in September 2000, he had
a
fundoplication
to cure a reflux
problem he had developed, which was causing 'aspiration' problems where some of his stomach contents were ending up in his lungs.
For the next few months David was fairly stable. He had a couple of
visits for a day or two with problems with his PEG leaking (or coming out!) and
only one week long visit when he caught a cold which turned to pneumonia very
quickly. Otherwise he progressed quite well, gaining a bit more
weight and generally looking much better.
During the 'winter' period of 2001 (June to September) he again had recurring visits to hospital, usually when he contracted an upper respiratory viral infection. These would cause a rapid decline and the oxygen 'saturations' in his bloodstream would fall, requiring him to be on an oxygen mask for several days, until the infection passed. Each of these visits had us wondering if he would recover again, but he is a tough little fighter and can show many of us how to handle adversity. He never ceases to amaze everyone with his refusal to give up, despite all he has suffered.
From October 2001 to June 2002, David managed to keep out of hospital, except for a couple of brief visits to the Casualty Dept. when his P.E.G. came out, or for 'just in case' blood tests. In July, however, he began his 'winter routine' again of developing upper respiratory infections and/or fluid balance problems and spending a few days in hospital each time until he recovered. Unfortunately, he does not follow the 'normal' rules and keeps the staff guessing at exactly what is wrong with him and what treatment he needs. The best treatment usually seems to be to give him oxygen and antibiotics and then wait for him to recover by himself.
During 2003, this young man has continued his disregard of all the rules (including his own), as he was admitted once in March for observation when he had a minor 'episode' at school. He spent the weekend in hospital and did nothing out of the ordinary for the whole time. He then proceeded to go right through the winter period without being close to an admission. Other than a couple of 'check-ups' at the emergency dept and his routine clinics with his specialists he stayed out of hospital for the rest of 2003. The only other problem is that his scoliosis has slowly increased in severity. (Children with Cerebral Palsy and epilepsy tend to develop curvature of the spine due to continual seizures pulling the body to one side.) As with David's other conditions, all we can really do with this is to keep watching to make sure it doesn't cause any new problems, as most of the 'normal' methods of treating scoliosis are not suitable in his case.
Over the next few years he has been more stable, his hospital visits being primarily for routine 'clinics' and occasional checks at the Emergency Department. He has had only one major admission in 2006 for a severe chest infection, so life has been relatively 'normal' recently.
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David is aware of and responds to his surroundings and people nearby (when he feels like it). I have seen his face transform when his favourite nurse walked into his ward in the hospital. He can also completely ignore everything if he is in a bad mood, or feels threatened. Even if he is ignoring people, he is still aware of them and taking in what is happening. He can understand very basic vocabulary and instructions, even if he ignores them. He also enjoys music, preferably with a solid rhythmic beat and bright colour and movement. Like everyone, he has his good days and bad days. Sometimes he is very grumpy and vocal, but when he is having a good day, his smiles and 'burbling' transform him and make life wonderful for everyone around him. Many people have wondered what quality of life he has. My only answer is that if he did not think his life was worth living, he would have taken one of the many chances he has had to give up. There have been many times when he has been extremely ill and has pulled out of it purely through his own strength. He is an incredible example of strength and courage in adversity. I believe if he is willing to persevere, the very least we can do is to support him. Despite (and because of) the difficulties, having David is a great blessing. He shows everyone around him what true strength and faith are. He has accepted the life he has been given and made as much of it as he is able. He trusts the people who are helping him, even when he is complaining about some of the treatments. He also shows us the importance of things we usually take for granted, such as a happy smile, a period of good health with no problems or just the simple pleasure of something like a ride in the car.
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Diabetes Insipidus
is a condition where the body produces excessive amounts of very dilute urine. It is not
'sugar diabetes' ( diabetes mellitus) which causes excess urine output as a side effect.
There are 2 types of Diabetes Insipidus; Central D.I. (David's type) caused by the brain not
producing an antidiuretic hormone called vasopressin, or Nephritic D.I. , caused when the kidneys
do not respond to the vasopressin.back
Family Doctor.Org re DI
Epilepsy
is a brain disorder in which the brain's electrical signals 'short circuit', causing 'seizures'
which can show as muscle spasms (of varying degrees of severity) or 'absence
seizures' when the sufferer simply seems to 'switch off' to all external stimuli.
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Epilepsy Victoria Australia Homepage
A good definition of
epilepsy from the Epilepsy UK site
Fundoplicationis an operation which wraps the top of the stomach around the bottom of the oesaphagus. This prevents the stomach contents 'refluxing' back up into the oesaphagus and causing 'heartburn'. If the reflux is severe, food can go high enough in the oesaphagus to reach the windpipe and be 'aspirated' into the lungs, causing pneumonia and chest infections. back
A Gastrostomy Tube is a fitting inserted surgically through the stomach wall to supply (liquid) food directly to the stomach.back
A good explanation from the Muscular Distrophy Association
Haemangiomas are ( simplified) caused by small blood vessels rupturing and causing 'mini bleeds'. They are (as far as is known) not very common inside the brain, but we do know that he was not born with them, as his CAT scan at 9 months did not show any sign of them In themselves,they are not a problem, but one near the centre of David's brain grew enough to block the duct which drained the fluid from his brain causing a pressure build-up. This was the reason for him requiring the neurosurgery in 1999 back .
TheHypothalamus is the region of the brain which controls most of the body's hormonal system. Hormones are used to control functions as diverse as: filtering water from the blood; feeling hungry or thirsty; temperature control, etc.
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David in hospital with Mum August 2000