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21 March 2022

Down syndrome support groupFrimley Health maternity units are launching hand-made support packs for families whose baby has received a Down syndrome diagnosis after birth.

Letters of support from families who have previously received a postnatal diagnosis, along with other support resources, have been made into support packs to give to future families on the unit.

Families who had received a postnatal diagnosis of Down syndrome fed back to the team that hearing from others who had gone through similar experiences would have been extremely valuable to them.

Working with our Maternity Voices Partnership (MVP), a focus group has been set up with the aim of making wider improvements to our local maternity and neonatal services for families with, or expecting a baby with Down syndrome.

This focus group has helped the MVP to identify several other themes that will be used to develop new education resources for our clinicians, including the choice of language and postnatal care given to families.

Frimley Health is pleased to be launching these support packs on World Down Syndrome Day: 21st March, a date particularly symbolic as 21 and 3 represent the 3 copies of chromosome 21 present in most people with Down syndrome.

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