When you are told your baby has or might have a genetic condition or anomaly you may feel very alone. You may think that no-one can possibly understand how you feel. When you are given the news that your baby has an anomaly, you lose the healthy baby of your dreams and sometimes your belief in yourself.
At first, it is likely that you will have a mixture of very confusing emotions. There will be grief at the loss of the healthy baby you had hoped for, as well as sadness for the baby you are carrying. In this state of emotional turmoil the decision about the future of the pregnancy can feel almost impossible. With some conditions, there is lots of information available; with others, very little is known. You may have to ask to speak to a geneticist or paediatrician to get some of the answers you want and/or contact a specific condition organisation.
Only you can decide what is best for you and your family. The responsibility of this can feel very challenging. You may find you go back and forth from one decision to another. This can feel really difficult, but is part of the decision-making process. Eventually you will know which route forward feels right for you; or as some parents have described it, you will know which way seems the ‘least worst option’ in the circumstances.
ARC offers practical advice, independent information and individualised support to parents whose baby is diagnosed with any condition or anomaly. If you contact us on our helpline, we can:
- help you to make sense of what you’ve been told and to find out more if necessary
- listen to you and acknowledge the difficulties of your situation
- support you in coming to a decision that feels right for you and your family
Please don’t hesitate to contact the ARC helpline as we have many years’ experience in providing independent non-directive support to parents in distressing circumstances.