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2015

Links to resources featured during Trisomy Awareness Month 2015.

These links are all to external websites and SOFT UK takes no responsibility for the content of these.

Genes and chromosomes  A simple explanation from Scientific American
Prevalence of T18 and T13 Access the latest UK data
First identification of T18 by JH Edwards and colleagues in 1960 The Lancet article
Average life-expectancy for a baby born with T18 Read more about these amazing children
Support from other families Watch these inspirational stories
Risk of miscarriage Mark your significant date on Days That Matter
First identification of T13 by Dr Klaus Patel and colleagues in 1960 The Lancet article
Ongoing health supervision of an infant with T18 or T13 Watch Dr John Carey's guidance 
Prenatal screening for T13 and T18 Visit the Fetal Anomaly Screening Programme website
Sleep apnoea GOSH has more info on obstructive sleep apnoea
Risk of a baby with T13 or T18 being stillborn The Stillbirthday resources may help with birth plans
Constipation is a common concern for people with T13 and T18 Watch this Trisomy Talk video on constipation
It is common for children with T13 to have eye problems Find out more from Complex Child about assessing vision
Children with T13 or T18 have profound developmental delays Find out about alternative communication from the Comm Trust
Average life-expectancy for a baby born with T13 See this in memory video from Now I Lay Me Down to Sleep
Rates of termination in Britain Parents talk frankly of their experiences
Partial trisomy 13 (Robertsonian translocation) Read more about this rare condition
Complicated grief Watch this Q&A from Dr M Katherine Shear
Most newborns with T13 and T18 will have problems feeding The Oley Foundation tube feeding guide
Mosaic forms of T13 and T18 are rare Watch this inspirational story from Brandon
Medical intervention Find out what to expect in a neonatal unit (Bliss charity videos)
Hospice care Find hospice support in your area (Together for Short Lives)
Caring for long-term survivors Download the SOFT USA resource
Holoprosencephaly The Carter Centre has more info about this condition 
Cleft lip and palate CLAPA has some fantastic resources
Maternal age risk factor Read more about the pregnancy experiences of older mothers
Paediatric palliative care Watch a day in the working life of a children's palliative care nurse
Slow growth of infants with T13 and T18 T13 & T18 growth charts (thanks to Dr Bonnie Baty and SOFT USA)
Ring 13 & 18 Unique has info on these rare related conditions
Deletions on chromosomes 13 & 18 Unique has information on these rare genetic conditions
Heart defects CDC information on congenital heart defects