Advice for Pregnancy
If you decide to continue with your pregnancy, there are many things you may wish to consider. Carrying a baby with Trisomy 13 or 18 may mean:
* there is an increased risk of premature labour
* the baby may be miscarried, stillborn, or die shortly after birth
* you may be able to take the baby home
Click the headings for further information.
You do not know how long your child will live and the pregnancy is a precious time. You need positive support from the medical staff, preferably the same obstetrician and midwives to avoid constant explanations when you are examined....
Babies with a severe chromosome abnormality may suffer from major medical problems and be stillborn or die shortly after birth......
Finding out I was pregnant was the best news as we had been trying for a year. Like every other pregnancy, we were thrilled that we were going to have our own baby....
In March 2006 we found out I was pregnant. The pregnancy was not planned and came as a total shock to both of us and it was around the eight week mark I began suffering from all day sickness.......
I remember when we first told Charlotte (5) and Harry (3) they were going to have a baby brother or sister......
It is a good idea to think about what you would like to happen when your baby is born, to ensure that everyone fully understands your wishes prior to the delivery. Doing this in advance allows you to talk over the options with the medical professionals and your family. It also helps reduce the stress at the time of delivery and enables you to enjoy your time with your baby.
Every child will have different needs and every family will have different ideas on what they want. We do not recommend any particular methods, treatments or strategies. These samples birth plans are just EXAMPLES of things you might want to consider, kindly provided by real families who wanted to use their experiences to help others.
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.
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 email@example.com
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 firstname.lastname@example.org or contact her via telephone on 07957 620608
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
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