Page last updated at 14:55 GMT, Monday, 10 December 2012

Edwards Syndrome debate

Labour MSP Richard Baker told MSPs he was confident services for babies requiring palliative care, including those suffering from Edwards Syndrome, would improve with a nationally established pathway of care, during his member's debate on 13 February 2012.

Mr Baker explained the reason for his debate was because of a baby called Caoimhe who had Edwards Syndrome and lived for 65 days.

Her parents Patricia and Peter were in the chamber for the debate and brought the syndrome to the attention of Mr Baker as well as launching Caoimhe's Trust for Edwards Syndrome to help support and inform other families dealing with the syndrome.

Edwards Syndrome is a rare genetic chromosomal disorder occurs when a child is born with three copies of chromosome 18, rather than the usual two.

It occurs in around one in 6,000 live births and around 80 per cent of those affected are female.

However, the majority of babies with the syndrome die before birth.

There's no cure for Edwards' syndrome, but medical treatment of symptoms is provided as required.

Treatment focuses on providing good nutrition, tackling infections - which arise frequently - and helping the heart to function better.

Emotional support for parents and other members of the family is vital, as babies with Edwards' syndrome have a shortened life expectancy.

Few survive beyond their first year.

Mr Baker said there were plans for a Scotland wide palliative care pathway which would hopefully ensure the support and care necessary for families with babies in palliative care would get the best treatment everywhere in the country.

Public Health Minister Michael Matheson congratulated Caoimhe's parents for providing an essential form of help and support for other parents and families going through a similar experience to theirs.

Mr Matheson went on to say the neonatal national screening committee was currently considering the issue of specific screening for Edwards and Pataus Syndromes in the first trimester and he expected to hear the conclusions of that piece of work by next year.

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