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...
2012 SOFT Weekend NEW LOCATION SOLIHULL Village Hotel May 5/6th
Solihull DeVere Village Hotel will be the 2012 venue for the SOFT Weekend.
There will be T13/18 specialist speakers, a Time of Remembrance, a family SOFT dinner on the evening of the 5th, and a balloon release.
To book a double room with breakfast at the hotel at a discount rate of £60, (small supplement for a family room) ring 0844 980 0118 reference 'SOFT050512'. Please book early to avoid disappointment.
Activities for children of all ages will replace the creche and the swimming leisure facilities are free to families who stay overnight.
Check back soon for Conference Booking Forms.
SOFT Magazines
- SOFT magazine - Daniela
- Autumn winter 2011
- Spring Summer 2011
- Autumn Winter 2010
- Spring 2010
- Autumn 2009
SOFT UK Scottish Conference November 12th 2011
The Scottish meeting was held on November 12th 2011 at the Dunblane Hydro Hotel, Dunblane,
21st SOFT Conference May 7-8th 2011
A brilliant Conference Weekend with a creche, talks, laughter and tears. Events arranged for members included a Time of Remembrance, balloons and sky lanterns........
