She called for a British and European register of these babies - estimated at between 60,000 and 100,000 - and the setting up of centres to look after them when complications arose.
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Hole-in-the-heart babies are being neglected as they grow into teenagers and adults, Dr Jane Summerville, a cardiologist at the Royal Brompton and National Heart Hospital, London, warned the congress. 'These children are getting a raw deal once they reach adult life. Proper care would prevent deterioration in their condition and improvement in their disabilities and way of life'.