Caring for a baby with T13/18
'Frequency of occurrence, gaps in medical knowledge, and lifespan of babies combine to invalidate previous statistics.'
Professor John Cary SOFT USA
Click the headings for information.
A baby with 13/18 may be born after no prenatal diagnosis or when parents have made a decision to continue a pregnancy.
When a baby lives
‘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
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
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....
Liam, extracts from Mel's blog
Saturday, 17 October 2009: Birthday Surprises Liam’s sneaky arrival!!! At 1am I started to have Braxton Hicks contractions. 20 minutes later I was on the phone to the labour ward....
Noah by Debbie, Mo Ali, Joshua, Thomas and Megan
Noah was born on the 18th January 2006, 33 weeks and 6 days early. He was born by emergency c section as he wasn't growing....
Eve Charlotte
4th Jan 2010 – 4th Feb 2010. Trisomy 18 Angel
The day had arrived when I would meet my baby. I was 42 weeks pregnant and going into hospital to have my
labour induced....
Children's Hospices
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. Hospice details...
Nominate them before 3rd May for the 'Who cares award' for the chance to win them a break.
InsuranceWith, supported by Genetic Alliance UK, have launched the Who Cares Award to give carers the opportunity to be recognised for all of their hard work. The awards will be based on nominations from the public or through dedicated charities of those people who support others, dedicate their lives or put their lives on hold to care for others. Candidates can be young or old, a professional nurse or a relative. You can nominate someone you know here.
SOFT UK Northern Ireland Family Day 2013
The Northern Ireland Family Day will take place on Saturday 10th August at the Charelmount Arms Hotel in Armagh.
Join other SOFT UK families to chat, share experiences and bring the children along for the fun activities! There will also be some remembrance time for those families who wish to remember a loved one.
As always everyone is very welcome!
Refreshments will be provided.
For more information and booking, please contact enquiries@soft.org.uk
Siblings Research Project
Joanne Fullerton, a Trainee Clinical Psychologist with Bangor University is completing a study investigating the experiences of siblings of children with life limiting conditions. She is looking for volunteers to take part. The aim of the study is to better understand the experiences of this group of siblings. If you are the parent of a sibling aged between 3 and 16 years, and you and your sibling child wish to take part, simply email her on j.fullerton@bangor.ac.uk or contact her via telephone on 07957 620608
SOFT US Website Launch
Our colleagues at SOFT USA have just launched their new website. It has a fantastic new look at contains lots of resources for families and also professionals. There is a comprehensive research section, providing all the details of the latest research on Trisomies and related issues. There are some beautiful family stories and videos and links to all their support materials. The site also has a foreign language translation function for those who first language is not english.
SOFT US have worked in partnership with us for many years and have kindly given us permission to feature their content on our own site, making sure that all families have access to the information that they need.
So head on over and have a look at www.trisomy.org
CEN report on Emotional Impact of Tube Feeding in Scotland
The CEN have published their results on their work improving support for families in Scotland of children who are tube fed. The full report is available here. http://www.cen.scot.nhs.uk/files/Emotional_Impact_Evaluation_Jan13.pdf
