herald

Tuesday 6 December 2016

Register to be set up for Down Syndrome births

health

Fiona Mcgrane, nurse manager at Tallaght Hospital.
Fiona Mcgrane, nurse manager at Tallaght Hospital.

A Dublin-based register has been established to provide detailed information on the number of children being born with Down Syndrome in Ireland.

Prior to the register being set up, figures were not available on how many babies were born across the country every year with Down Syndrome, according to Fiona McGrane, a clinical research nurse.

She holds a unique position as the only nurse in the country at present providing a service that is specific to children with the condition.

"We were trying to capture as well if the babies were being born with any medical problems, what were the problems they were being born with, and what was more prevalent," she said.

Maternity hospitals are reporting when children with Down Syndrome are born - parents are asked if they would like to be part of the register.

MASSIVE

"It's a massive undertaking, but thankfully we are hoping by establishing the register for the parents of the future that we will have the answers to the questions that they ask, and that we will be able to give them the information, [something which] we wouldn't have previously been able to do," she said.

"Say, for example, the baby may be born with a problem with their thyroid gland or a cardiac problem. [Parents] would often ask me, are there many babies born with this condition? It's the practical stuff, or people would be asking in their area, how many babies would be born in this hospital in a year? We will be able to provide the figures for that," she said.

The register is being compiled within the Department of Paediatrics in Trinity College.

As a nurse manager for children with Down Syndrome, Ms McGrane is based in Tallaght Hospital and is Down Syndrome Ireland's specialist nurse.

"I cover nationwide support really for children from birth up to the age of 18," she explained.

"I would get referrals from maternity hospitals across the country for advice and support."

Last year, from March to December, she had around 348 hospital attendees and 1,978 calls.

One in every 444 babies born in Ireland will have Down Syndrome, said Ms McGrane, whose role is extremely active with the goal being to ensure the individual and their families are all informed and cared for.

To see a list of upcoming fundraising events for Down Syndrome Ireland, visit www.downsyndrome.ie.

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