Parents' Perspective of Trisomy

SOFT UK is the national support organisation for families affected by a diagnosis of Trisomy 13 (Patau's Syndrome), Trisomy 18 (Edwards' Syndrome) and related conditions such as Mosaic Trisomy and Partial Trisomy. https://www.soft.org.uk/

Trisomy 13 and Trisomy 18 are chromosomal conditions, where the presence of additional genetic material affects health and development. Trisomy conditions occur on a wide spectrum, with varying impacts on a child's health, development and life expectancy.

Trisomy 13 affects approximately 1 in every 4000 pregnancies in the UK. Around 80% of children are born with FULL TRISOMY 13, meaning that all of their cells have an extra 13th chromosome. Trisomy 13 commonly affects brain development. Around 80% of babies will be born with a heart condition. Problems with the eyes are very common. Babies will also commonly have difficulties with feeding or breathing and some babies will develop seizures. FULL Trisomy 13 is considered life-limiting, which means it is likely to affect how long the baby is expected to live for.
To find out more visit https://www.soft.org.uk/trisomy-13

Trisomy 18 affects approximately 1 in every 1500 pregnancies in the UK. Trisomy 18 commonly affects brain development. Around 90% of babies will be born with a heart condition. Cleft lip or palate can be associated, as are variations in limb development. Babies will also commonly have difficulties with feeding or breathing and some babies will develop seizures. FULL Trisomy 18 is considered life-limiting, which means it is likely to affect how long the baby is expected to live for.
To find out more visit https://www.soft.org.uk/trisomy-18

SOFT UK supports families affected by these conditions, to ensure they have the information and support they need at every stage of their Trisomy journey. We aim to provide the most up-to-date, relevant information on Patau’s and Edwards’ Syndromes, in a way that is accessible to both families and the professionals working with them. Our information is evidence-based and prepared in collaboration with our professional advisers.

SOFT UK’s supports families at every stage of their journey; through pregnancy, when caring, after a loss, expecting a new baby and beyond. There are a range of ways to access our support; through our publications, our befriending service, our social media pages or our Family Events.
To find out more about our supports please visit: https://www.soft.org.uk/Support

SOFT UK families share their experiences of receiving a Trisomy diagnosis in this touching video.
This video was developed by Public Health England Screening for use in training professionals to work with families affected by a diagnosis of Trisomy. Families talk about how they received their diagnosis, what worked well, what could have been better and what they needed as a family when faced with this news.

SOFT UK's website contains many families' stories of their Trisomy experiences. To read their stories please visit: https://www.soft.org.uk/soft-families

© Crown Copyright 2018. This information was originally developed by Public Health England Screening (https://www.gov.uk/topic/population-s...) and is used under the Open Government Licence v3.0