Difficult Decisions

When a baby is found to have an abnormality

Abnormalities are often found through routine screening, either blood tests or ultrasound scans, and so are mostly unexpected. When a problem is identified parents can feel very alone. There is a lot of information to take in and very difficult decisions to make. The options ususally include continuing the pregnancy and getting prepared for what is likely to be needed by the baby after birth, or ending the pregnancy. Ending a pregnancy in these circumstances is called a termination for abnormality. This page aims to provide some useful resources and information about what is involved when ending a pregnancy, what support is available for parents and also includes a woman’s own experience. Some of the information is quite sensitive and may be difficult to read so links are there to enable you to explore at your own pace. Tara’s story, a woman’s experience in her own words.

Ending a pregnancy

When a decision has been made to end a pregnancy because an abnormality has been found, the Fetal Medicine Consultant and Midwife will spend time talking about the options, the practicalities and what to expect during the procedure. In most situations there is no rush to make decisions and you will have time to think about what you want to do and be given the opportunity to ask all the questions you have. You will also be given written information about the processes and choices that are before you.

We let your GP know what is happening at all points along the way. They will be able to organise a sick certificate for you and offer support following the procedure. Your partner’s GP will also be able to provide a sick certificate and follow up support for him as we know this is a process that affects both of you.

Support from the Bereavement Midwife

The Bereavement Midwife helps to support and coordinate care for women and their families who experience baby loss at any gestation. This role is part of the Norfolk and Norwich Hospital hospital’s commitment to the National Bereavement Care Pathway (NBCP) for pregnancy and baby loss. The bereavement pathway includes miscarriage, termination of pregnancy for fetal abnormalities and baby loss up to first year of life. The Bereavement Midwife is also a point of contact if for any questions or queries. To contact the Bereavement Midwife, please email:  bereavement.midwife@nnuh.nhs.uk

Support from the Hospital

The Hospital Chaplains (Chaplaincy) are an experienced team, offering support to parents ending a pregnancy for an abnormality. They are not there just to provide support for people with religious faith but are there for anyone going through a very difficult time. They coordinate some of the paperwork involved and so are likely to visit you to discuss this. They are able to see you either when you see the Consultant and Midwife in Fetal Medicine or on the ward. The  following link will take you to their webpage which has some leaflets about practical choices after a baby dies, either before or after 24 weeks of pregnancy. These choices will be discussed with you when you see the Consultant and Midwife. The Chaplains would be pleased to offer you ongoing counselling and bereavement support even after you have left the hospital.

Other information and support

There are many different organisations available offering information, help and support to you. Sometimes it can be difficult to know where to look. The sites listed below are accredited and run by experienced staff, trained to help in these difficult situations.

ARC – Antenatal Results and Choices

ARC is a national charity that was founded by parents and works closely with the medical profession. The staff at ARC offer support and information during the antenatal screening journey and are able to talk through both screening results and when an abnormality is suspected or diagnosed. They have produced a number of booklets providing practical and emotional support specifically for you, your partner and other members of your family. Their website allows access, through free membership, to a forum for parents – a place to meet and share online with others who are or have been in the same position. When you meet with the Fetal Medicine Consultant and Midwife you will be given a booklet from ARC that explains what happens when ending a pregnancy. It also talks you through how you may feel before and after the process.

Helpline – 0845 077 2290  or 0207 713 7486 from a mobile phone

 

 

 

 

Time Norfolk

Time Norfolk is a pregnancy loss charity that supports men and woman who have suffered some form of pregnancy loss ie miscarriage, termination, stillbirth, trauma related issued, pre and post natal depression, pregnancy support. We hold 1 – 1 sessions and group sessions.

A Heartbreaking Choice

This is an American website that offers support through forums, enabling people to share with others in the same position. It does not offer telephone support. A Heartbreaking Choice

Norfolk and Norwich Baby Bereavement Group

The aim of this group is to connect local families and share support. If you would like to get in touch with the group, they are contactable via Instagram, Facebook, Twitter or email.

Support for children

It can be difficult to know how to talk to and involve other children in the family when ending a pregnancy because of an abnormality. Children have their own way of dealing with loss and sometimes their reactions can be hard to cope with when you are dealing with your own grief. ARC has put together a booklet that helps with this issue but there are other organisations that are there to help you as a family.

Child Bereavement UK

Child Bereavement UK offers support for when a child grieves or when a child dies. They have a helpline manned by trained staff and also access to further resources

Helpline 01494 568900

Counselling Services

Unfortunately the Hospital cannot offer long term counselling support but your GP will be able to organise this for you. You may wish to talk to your Occupational Health Department if you have one at your workplace. The following websites can be used to find local accredited counsellors and some of these have particular experience or interest in supporting people with pregnancy related problems.

British Association of Counselling and Psychotherapy  – find a therapist

Counselling Directory  – Use the “find a counsellor near you” box