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Carrying a baby with Trisomy 13 or Trisomy 18 means that 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.

Once you have accepted the loss of your expected child and your dreams for their future, you can prepare to welcome a very special baby and will want to discuss possible problems and outcomes with the paediatrician. If you have other children you need to explain the baby will be poorly and may not be able to come home.

Your Birth Plan should take account of decisions that may need to be made quickly, such as an emergency Caesarian section for fetal distress. Doctors no longer assume the long term prognosis justifies non-intervention, and some parents will want to do all they can to enhance whatever chance the baby has of even limited length and quality of life. This can include opting for a Caesarian, or letting nature take its course. 

The NHS have a resource with advice on creating Birth Plans here.

One of our SOFT UK Families have kindly shared their experience of creating a birth plan for their child here




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