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Caring for a Child

Caring for a child with T13/T18 or a related disorder can bring many challenges.  

If you are aware of any services and links you would like to share with other parents, please forward them to us at website@soft.org.uk 

When a baby lives

Leah Cerys

‘Always feel that you can ask for information or advice - as many questions and as often as you need. Ask the people you trust and who can give you the information you need.’ 
Dr Una MacFadyen, Paediatric Consultant

Feeding difficulties

Haberman feeder

Many parts of the body do not develop properly when there is a chromosome abnormality, and babies suffer from 'failure to thrive' and feeding difficulties causing slow growth and low weight gains.

More about caring

Beth

Here we explore in detail many of the practical problems of caring for a baby with trisomy 13, 18, or a related disorder. Discuss any worries with your GP or paediatrician.

Video - One extra chromosome

A delightful video featuring babies and children with various chromosome disorders, watch this video

Finances

Caring for someone with Trisomy 13 or Trisomy 18 can put a strain on family finances.

Find out more about benefits and grants to which you may be entitled.

Children's Hospices

Many families find the support of Childrens' Hospices invaluable. If you are preparing for the birth of a baby with one of these syndromes, or care for a baby or child, there may be a Children's Hospice in your area providing 'home from home' support. 

Find support in your area - including hospice and respite care services - on the Together for Short Lives website.

Children's Hospice Association Scotland (CHAS) is a charity that provides the only hospice services in Scotland for children and young people who have life-shortening conditions for which there is no known cure. CHAS runs two children’s hospices and a home care service called CHAS at Home. 

Family Companion

Together for Short Lives publishes A Family Companion to help parents and carers of children who have been diagnosed with life-limiting and life-threatening conditions. 

Support in Scotland for babies with Edwards'

SOFT was involved in a Scottish parliamentary debate on Edwards Syndrome in December 2012.  Following this, SPICe prepared the attached document with the follow up information to the debate. It's an excellent summary of the issues raised.

Symptom Control

Basic Symptom Control in Paediatric Palliative Care is a key clinical tool used by children’s palliative care doctors and nurses across the world. It is the only resource of its kind that provides comprehensive guidelines for treating a wide range of symptoms experienced by children with life-limiting or complex health conditions.

It’s been designed to provide both practical support and hands on clinical information in the acute setting. It’s also been written in language that parents can easily understand, as doctors and nursing staff who care for children in the community often leave a copy in the family home so it is on hand for reference.

Download a free copy of the 9th edition (2013) from the Together for Short Lives website.

Health Issues

Please see below for a variety of information on health issues for children with T13, T18 and related disorders. 

If you have information you would like to share with other parents, please send it to us at website@soft.org.uk.

  • Adam

    Adam

  • Lily

    Lily

  • Carol

    Carol

  • Mia

    Mia

  • Rubi

    Rubi

  • Naomi

    Naomi

  • Samantha

    Samantha

  • Faizan
  • Ellie

    Ellie

  • Lewis

    Lewis