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Landmark ruling in child health case
[Posted: Fri 09/11/2001 - www.irishhealth.com]
by Deborah Condon
A couple's decision not to allow their baby son to undergo a 'heel pinprick' screening test for PKU, has been upheld in the Supreme Court in a landmark judgment.
PKU (phenylketonuria) is a genetic disorder which prevents the normal use of protein food. The food we eat contains proteins, one part of which (phenylalanine) cannot be broken down by a person with the disorder. Without treatment, PKU can lead to impaired brain development, however this can be prevented by early detection and the use of a controlled non-protein diet.
The landmark case saw the North Western Health Board fail in its challenge to carry out the test on the now one-year-old boy. The boy's parents had objected to the test on the grounds that it was an invasive procedure.
The heel pinprick test is administered to new born babies in all of the State's maternity hospitals. It involves taking a very small sample of blood from the heel, in order to test for metabolic disorders, such as PKU.
In the Supreme Court judgment, Ms Justice Susan Denham upheld the couple's decision stating that if the court was to order it, this would mean that parents would have no rights to refuse such tests, which would have far reaching implications for the amount of State intervention for children.
Parents with unorthodox or unpopular parenting methods could find themselves subject to State intervention, she said. While she disagreed with the parents' decision not to allow the test, they had the liberty to make that choice, she added.
The ruling was supported by a four to one majority by the Supreme Court.
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| i have 2 children both with pku (but not as severe as in some cases)they are both healthy and well and developing normally and in some respects are ahead of developmental milestones for their ages. with regard to invasive procedures, i take their blood each week by a heel prick to check that their levels are below the 400 guidelines issued by the metabolic team in temple st. and neither of them seem to mind ( they are 20 months and 4 months) pku is easily controlled by altering their diet to reduce the amount of phenylalanine. i would reccommend all parents to avail of the heel prick test so that their child will have the best possible quality of life in later years because if left unchecked it can lead to developmental problems and in severe cases brain redardation. the most formative years are 0-7 so early detection is best. no parent if left with the choice would like to see their child develop mental problems if they could easily be prevented. in my opinion the heel prick test should be compulsory and i would hazard a guess that all parents of children with pku would agree. |
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Hi there, I am doing a presententation in the Uk on PKU 22nd March, but the paper must be handed in on Fri 19th. I am very impressed with your comments there. I am Irish but studying in UK. This is something very interesting and I hope all is going well with you now - its been since 2004 this commented was posted so i am curious to know ? Thanks. |
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