Ending of a pregnancy due to fetal anomaly

Who is the leaflet for? What is its aim?

This leaflet is for women and birthing people, and their birth partners. It will explain the process of medically ending a pregnancy when a fetal anomaly has been found.

We appreciate that ending a pregnancy due to fetal anomaly is a very difficult and personal decision. There are services that can provide ongoing support, please see the information at the end of this leaflet.

Medical ending of a pregnancy is done by using two tablets, mifepristone and misoprostol. The first tablet, Mifepristone, blocks the action of progesterone, it essentially “switches off” the pregnancy hormones. The second tablet, misoprostol, is given 24 to 48 hours later, and causes your uterus (womb) to start contracting. The use of misoprostol tablet is unlicensed to be used for this indication but there is a strong clinical evidence to support its use for the medical ending of a pregnancy. The aim of having these medications is so you go in to labour, and birth your baby vaginally. It is one of the options recommended by the Royal College of obstetricians and gynaecologists (RCOG), and is considered safe.

If you wish to explore surgical ending of the pregnancy we can give you the contact information of providers of this service.

Asking for your consent

We will provide you with the relevant information to support you to make an informed decision about your care and treatment. Before any treatment is provided, you will need to provide your consent by signing a consent form. A member of staff will explain the consent process to you. If you would like more information about our consent process, please speak to the member of staff caring for you.

Stage 1: Mifepristone

The first stage of the process is taking a mifepristone, which is given orally (by mouth) as a tablet. This is offered to you whilst you are at the fetal medicine unit at the Rosie hospital. Mifepristone can be taken safely by most people but it may not be suitable for everyone. Your doctor / midwife will have checked your medical history and any other medications you are taking to confirm that it is safe for you.

As with all medications, there are some potential side effects to be aware of:

Very common (may affect more than 1 in 10 people)

• uterine contractions or cramping
• diarrhoea
• feeling sick (nausea)
• being sick (vomiting)

Common (may affect up to 1 in 10 people)

• heavy bleeding
• gastro intestinal cramping light or moderate
• infection of the uterus (endometritis and pelvic inflammatory disease)

Uncommon (may affect up to 1 in 100 people)

• blood pressure fall

Rare (may affect up to 1 in 1000 people)

• fever
• headache
• generally feeling unwell or tired
• vagal symptoms (hot flushes, dizziness, chills)
• hives and skin disorders which can be serious

We ask you to stay in the unit for around 30 minutes after taking mifepristone in case you have any adverse effects. If you feel well enough after this time you can go home. You will be given a date and time to come back to the Rosie for the next stage.

Please contact clinic 23 for advice on 01223 217217 if you experience any of the following:

• Excessive vaginal bleeding (soaking through more than 1 large pad in an hour)
• Develop a fever of 37.5 oc or higher
• You start leaking fluid from your vagina

Stage 2: Misoprostol

At the agreed time and date, we will ask you to attend delivery unit on level 3 of the Rosie, where you will be shown to a private room with en-suite facilities. Your partner, a relative or a friend will be able to stay with you, if you wish. The length of time you will be in hospital varies, but please plan to be here for at least one night. You can eat and drink as normal.

Once you are settled and feel ready to go ahead, we will give you misoprostol. The first dose is gently inserted in to your vagina, and subsequent doses are taken orally. The length of the process varies from person to person. You may need up to four oral doses, each one four hours apart, before you are ready to give birth.

If you have had a previous caesarean section or major surgery on your uterus we will give you a reduced dose of this medication. This is to reduce the risk of your scar opening.

Side effects of Misoprostol are:

Common (may affect up to 1 in 10 people)

• dizziness
• headache
• stomach pain
• constipation
• wind
• indigestion
• feeling or being sick

Uncommon (may affect up to 1 in 100 people)

• fever
• irregular periods
• periods problems
• severe uterine pain

Rare (may affect up to 1 in 1,000 people)

• cramping

Not known (frequency cannot be estimated from the available data)

• allergic reactions, including swelling of the hands and feet, face, lips, tongue or throat and which may cause great difficulty in breathing
• prolonged heavy or painful bleeding
• chills
• high temperature

What to bring with you

• Any medication you are taking
• Toiletries
• Large sanitary towels
• A loose fitting tshirt or nightie
• Flip flops / slippers
• Phone charger
• Fresh clothes

Pain relief options

There are a variety of pain relief options available for you to chose from. These include:

• TENS machine
• Paracetamol and dihydrocodeine
• Entonox (gas and air)
• Morphine – either an oral solution or IV (in to a vein)
• Epidural

Your midwife or the anaesthetist can discuss these options with you in more depth.

Possible complications

During the process of ending your pregnancy, there are some complications that can occur:

• The placenta becoming “stuck” inside your uterus, requiring a short procedure in theatre to remove it. This happens in about 1 in 20 (5%) of people ending their pregnancy.
• Excessive bleeding happens in less than 1 in 1,000 (0.1%) of people ending their pregnancy before 20 weeks, and 4 in 1,000 (0.4%) after 20 weeks.
• Damage to the uterus happens in less than 1 in 1,000 (0.01%) of people ending their pregnancy. This would be repaired in an operation under general anaesthetic.

Possible problems that can happen after ending the pregnancy (but may not be evident until days or weeks later) include:

• Infection – this can happen in up to 1 in 10 (10%) of people after ending a pregnancy. You may be offered antibiotic treatment if this occurs.
• Incomplete emptying of the uterus (small bits of retained membranes or placenta). This happens to about 2 in 100 (2%) of people. The treatment for this varies. You will be offered antibiotics, some people may also be offered another dose of misoprostol, or, in rare cases, a surgical procedure.

Seeing and / or spending time with your baby (optional)

In some cases, a baby can be born showing signs of life. Some families may choose to spend this time with their baby, while others may prefer not to. Our staff will support you in whatever you decide. You may choose to bring clothes, a blanket, or soft toy for your baby. If you choose not to, or are unable to provide these, we have blankets you could use.

When a baby is born showing signs of life, this is referred to as a neonatal death and a doctor would be expected to see your baby whilst alive and again following death. They would also need to speak with the hospital’s medical examiner, and in some cases, further discussion with a coroner may be necessary. The team caring for you will keep you fully informed throughout.

Following a neonatal death, you would legally be required to register your baby’s birth and death within 42 days; the Rosie bereavement team can give you more information on how to do this.

We offer the option of creating memories of your pregnancy and your baby. These can include memory boxes, wristbands, certificates and where possible photographs, handprints and footprints. It is your choice if you would like any or none of these options. You will be supported whatever your decision.

If you wish, the Rosie bereavement team will make contact with you to offer you practical support such as arranging a funeral for your baby.

Further examination (post mortem) of your baby

A post mortem examination of your baby may be possible if you are more than 12 weeks pregnant. If so, it may provide us with information that will help to explain the possible causes of your baby’s anomaly and assess the chances of it happening again in a future pregnancy.

There are some restrictions in cases when ending a pregnancy due to fetal anomaly, if a diagnosis has already been made then in some cases the pathologist may decline to perform a post mortem. This will be discussed with you in more depth.

In rare circumstances, if your baby is born alive but is not seen by a doctor before and after their death, the coroner may order a post mortem examination. In these cases, this is a legal requirement which you would not be able to decline.

Advice after you have returned home

Lower abdominal pain

You may have some pain / discomfort after birth. You can take paracetamol and / or ibuprofen tablets as required (assuming you do not have allergies to any of these). It is important you do not exceed the recommended daily dose: please read the label. If the pain does not settle with this pain relief medication, please contact your GP. If the pain is severe, go to your nearest emergency department.

Bleeding

It is normal to bleed from your vagina for about two weeks after the procedure. This might be heavier than a normal period at first but should reduce with time and become brown in colour. Use pads; avoid tampons as they can increase the risk of infection. If you are soaking through a large pad more than once an hour, or passing clots larger than a cotton wool ball, please call clinic 23 on 01223 217217 for advice.

Reducing the risk of blood clots in your legs or lungs

During and after pregnancy there is a small risk of blood clots forming in the veins in your legs. These clots can travel to your lungs, which can be serious. You can reduce the risk of these by gentle mobilisation, and by moving your legs and feet while sitting or lying. You may also be given stockings to wear. For some people, we will recommend a blood thinning injection which can be obtained from Pharmacy upon the presentation of a prescription, which you can administer to yourself at home. If you notice any areas on your calves that are red, painful, swollen or hot to the touch, please attend your nearest emergency department. Similarly, please attend the emergency department if you experience chest pain, shortness of breath, or if you cough up blood.

Sexual intercourse

It is recommended you do not have penetrative vaginal sex again until you have stopped bleeding, due to the risk of infection. Fertility can return quickly after pregnancy, if you need to, please discuss contraception with your GP, or a sexual health clinic.

Menstrual periods

Your next period may be delayed for about five to eight weeks after the ending of your pregnancy procedure.

Emotions and feelings

Every family will begin to recover from this difficult process at a different rate. Varying emotions, reactions, tears, feelings of grief and loss are all normal. We will discuss options to help provide ongoing support. Family members and friends can also be very helpful. If you or your partner need further support, please do seek help – talk to your GP.

Time off work

We usually suggest at least two to four weeks off work to help with physical and emotional recovery. You may wish to discuss the details of your recovery with your GP.

Follow-up appointment

Before you are discharged from the hospital, we will ask you whether you would like a midwife to visit you at home to perform a postnatal check. It is your choice whether you would like this, or if you would prefer to see your GP if needed.

After ending a pregnancy for fetal anomaly, we will offer a follow-up appointment with your consultant, usually eight weeks after the procedure. At this appointment the consultant will discuss the events of your pregnancy, the results of any tests (for example, post mortem and / or any genetic tests), and whether there are any implications for future pregnancies.

Useful sources of information

Antenatal Results and Choices (ARC)

A registered charity who offer continued support and advice to parents facing difficult decisions about fetal anomalies.

National helpline:
Mon - Fri, 10am-5.30pm
Tues and Thurs, 8pm-10pm

Email ARC to arrange an evening call.

Sands (opens in a new tab)

A charity that provides support to bereaved families

PETALS charity (opens in a new tab)

The baby loss counselling charity

FPA (Family Planning Association)

Sexual health and contraception advice

Website: FPA (opens in a new tab)

CUH Medicines Information Centre for medicines advice

Telephone no: 01223 217 502

Your comments and concerns

For advice, support or to raise a concern about your care and / or treatment, please contact the patient advice and liason service (PALS). You can contact by phone on 01223 216756, or via email (PALS).

NHS 111 (opens in a new tab)

Offers medical help and advice from fully trained advisers supported by experienced nurses and paramedics. Available over the phone 24 hours a day. Telephone: 111

Rosie maternity assessment line:

Telephone 01223 217217

Fetal medicine team:

Fetal medicine unit, 2nd floor, Clinic 22, the Rosie Maternity Unit.

Call during office hours, or leave a message: fetal medicine unit midwives, Telephone: 01223 216185, Monday to Friday, 08:00 to 18:00

Bereavement midwives:

Telephone 01223 217619, Monday to Friday, 08:00 to 16:00.