Keeden Waller was born following IVF in 2000 but four days afterwards had a stroke which caused permanent brain damage resulting in him being unable to walk, talk or feed himself.
Keeden's parents, Debbie and Lawrence Waller, are suing Dr Christopher James for around 10 million Australian dollars for negligence, reports the Sunday Morning Herald. The couple allege they had told Dr James about the condition, which Keeden inherited from his father, yet he failed to inform them there was a 50 percent chance that their child could be affected too.
The New South Wales Supreme Court heard how Dr James gave the Wallers the telephone number for a genetic counsellor but did not himself seek out information on the risk. The number was for the main switchboard of the hospital where the counsellor was based and went unanswered when called. The Wallers did not call back and Dr James did not mention the genetics counsellor again during the course of treatment.
'We love Keeden now that he's here, but if we had the right information and the right options we wouldn't have gone ahead with the birth, not in the way we did', Mrs Waller told the Sydney Morning Herald. 'Had things been done right, Keeden would never have been here. He would never have to go through the suffering he goes through - seizures and all'.
But lawyers for Dr James told the court it was not the responsibility of IVF doctors to advise on the risks of passing a rare genetic disorder to any resulting children.
The Wallers are seeking compensation for mental distress and the cost of caring for Keeden. 'Neither parent has been able to work much. They've had to modify their home - the financial impact of something like this is huge', said the Wallers' lawyer.
Antithrombin deficiency is a blood clotting disorder. Although strokes can be caused by blood clots limiting or cutting off the supply of blood to a region of the brain, lawyers defending Dr James told the court there is little evidence of an increased risk of strokes in children with antithrombin deficiency.
'There are millions of children around the world who suffer from this disorder, but the incidence of stroke is extremely rare, particularly in neonates', said Dr James's barrister, Jeremy Kirk SC during the trial.
'It's relatively clear that the stroke would have happened anyway... [the blood condition] was, at most, a minor factor'.
This is the second time the Wallers have sought compensation. In 2006 they unsuccessfully claimed damages for 'wrongful life' on Keeden's behalf for loss of opportunity and earnings against Mrs Waller's two obstetricians and the IVF clinic.