Facebook Twitter Instagram Facebook Twitter Instagram

If you decide to continue with your pregnancy, there are many things you may wish to consider. Carrying a baby with Trisomy 13 or Trisomy 18 may mean:

*   there is an increased risk of premature labour
*   the baby may be miscarried, stillborn, or die shortly after birth

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.

Discuss Possible Outcomes:

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.

Help During Pregnancy:

Other people can help during pregnancy by making contact, writing, visiting, and generally being supportive. It is less of a worry to have others to spread the news and do all the explaining. It is not helpful when people do not accept the gravity of the situation and try to say everything will be all right.

The Birth:

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.

What Will My Baby Look Like? 

Many newborn babies with Trisomy 13 or Trisomy 18 look like any other new infant to their parents, but it is common for babies to have a light birth weight, slightly lower than normal ears, clenched fists, unusual palm and fingertip patterns, and slower or absent reflexes. Some babies have other noticeable problems associated with these conditions. These may include a cleft lip, club foot, defects of the abdomen or eyes. Detailed ultrasound scans may detect these and allow parents to be prepared and make provisional plans with the paediatrician before the birth.

Useful Resources

SOFT UK has created a booklet to help guide you through different stages in your pregnancy. The booklet can be found here.

Registered Charity: 1002918 (England and Wales) SC043341 (Scotland). Copyright © 2005 – 2017 SOFT UK. All rights reserved.