Pregnancy loss: Supporting employees affected by termination for medical reasons
Author: Jane Fisher
Pregnancy loss charities have welcomed recent initiatives by some employers to offer paid time off to employees affected by miscarriage or stillbirth. One form of pregnancy loss that is rarely talked about, however, is termination for medical reasons. Jane Fisher takes us through the specific difficulties that can arise and how employers can help.
Although there is still a long way to go, the discussion around pregnancy and baby loss is increasingly open. Celebrities have spoken out about the pain of miscarriage, a Netflix film about stillbirth recently attracted Oscar nominations and there are numerous Instagram stories and blogs about baby loss.
However, there is an experience rarely talked about publicly that is shared by over 5,000 women and their families every year: the experience of ending a wanted pregnancy after a prenatal diagnosis, commonly known as "termination for medical reasons" (TFMR).
What sets TFMR apart from miscarriage, stillbirth or neonatal loss is that TFMR involves parents making an active decision that results in the loss. Because of findings from a genetic test or scan, couples find themselves faced with the heart-breaking choice of whether to end the pregnancy.
Before undergoing a TFMR, all women will have to sign a generic abortion consent form, but most will be desperate for the world to know that this was not an unwanted pregnancy. The word "abortion" tends to be associated with unwanted pregnancies and heated polarised arguments. For these reasons, it is best to avoid using the word abortion when referring to this situation and instead use "termination" or "ending a pregnancy".
The shock of a prenatal diagnosis
All expectant mothers in the UK are offered screening tests and ultrasound scans during their pregnancy. For most expectant parents, scans in particular will be a positive experience - a chance to meet their baby on screen and share in the excitement and anticipation of a new addition to their family. For a significant minority, however, what happens at the scan changes everything.
No pre-test information can adequately prepare parents for the intense physical and psychological shock of the moment when their hopes and expectations of having a healthy baby come tumbling down. In the words of a woman who faced unexpected news from a scan: "Nobody really expects to hear that their baby hasn't developed properly when they go to their scans. Nobody can prepare for the ice-cold shock of the sonographer turning around and saying, 'There's something I'm not happy with and I am going to refer you to a specialist'."
If the findings of the scan are significant - most often after an anxious wait for further tests - parents will be given their "options". In other words, they will be confronted with the agony of deciding whether to proceed with what is most often a much-wanted pregnancy. This will be one of the most difficult experiences a woman and her partner will ever live through.
"Nobody really expects to hear that their baby hasn't developed properly when they go to their scans. Nobody can prepare for the ice-cold shock of the sonographer turning around and saying, 'There's something I'm not happy with and I am going to refer you to a specialist'."
ARC helpline caller
Making the decision
The decision to end a pregnancy after a prenatal diagnosis is never made lightly. In making what they know is a life changing choice, parents consider factors based on their individual circumstances, their family situation and the medical facts about the outlook for their baby. They can often feel very alone at this time and the responsibility of the decision can weigh heavily. If the condition in their baby is survivable, they will sometimes worry that others may judge them for not proceeding.
Parents can be faced with this distressing scenario at different stages of their pregnancy: perhaps after screening tests at around 12 weeks or sometimes after the 20-week scan and, occasionally, even later. If the pregnancy has not exceeded 24 weeks, they will need to consider how exactly they want the pregnancy to be terminated.
Ending the pregnancy
Some women opt for a surgical procedure under general anaesthetic. Unfortunately, most NHS hospitals can only offer this method until 13 weeks into the pregnancy. If a woman wants a surgical procedure after 13 weeks of pregnancy, she will have to go to an independent provider and face being in a clinic with people who are using the services for different reasons.
The method offered most commonly by NHS hospitals is known as medical termination and involves the woman's admission to hospital for an induced labour and birth. It can be very distressing for women to endure what can be a long and physically painful labour, but with the ultimate prospect of no live baby to take home afterwards. However, this method of termination does give the woman and her partner the opportunity to see and hold their baby if they wish to say goodbye in this way.
After the procedure
After the procedure, the woman will have the physical after effects of pregnancy and childbirth to deal with, which can include heavy and prolonged bleeding and the distress of her milk coming in. For most women, the physical side of things is much more straightforward than the psychological impact.
The grieving emotions in the early days afterwards can be raw, intense and complicated. Women describe waves of almost overwhelming feelings, which can include anger, anxiety, sadness, confusion, guilt and disbelief. These are all normal grief reactions, but some women find it hard to allow themselves to grieve properly because they feel so personally implicated in the loss of their baby. Sometimes, they do not disclose the loss to many people as they are worried about being judged and this can leave them feeling isolated and frightened by the intensity of their emotions.
In this state of turmoil, the woman and her partner will also have practical things to consider. If the termination is after 24 weeks, they will have to register the birth and death. Whatever the gestation, they will need to decide if they want to arrange their own funeral or to leave things to the hospital. There may be delays to this if they have opted for post-mortem investigations. Their thoughts may then turn to what to do about returning to work.
How can employers help?
TMFR is a very private and personal experience and not all employees will feel able to share at work the exact circumstances of their loss. Employers should be ready to listen but take the lead from them. For example, some women may disclose details to their line manager but ask that these are not shared with other staff. If this is the case, it can help to agree a form of words to inform colleagues that there has been a pregnancy/baby loss, but to make it clear that the employee does not feel up to talking about it.
The amount of time that women will need to take off will vary and be somewhat dependent on the exact nature of their work. Some women will be keen to get back to a "normal routine" rather than staying at home with their complex emotions. Others might feel undeserving of time off because they made the decision to end the pregnancy. The fact is that all women will need to take some time to recover a little before returning to work.
"Others might feel undeserving of time off because they made the decision to end the pregnancy. The fact is that all women will need to take some time to recover a little before returning to work."
Jane Fisher, Director at Antenatal Results and Choices (ARC)
Employers can help by encouraging women to take the time that they need. It might help to explain that if they return to work too early, they risk overstretching themselves and needing more leave later. It is important that women do not feel pressured to return to work until they feel ready. A staged return can be useful as they are unlikely to return to work at full capacity straight away.
If a TFMR took place after 24 weeks of pregnancy, the employee will be entitled to full maternity leave and benefits. It is important to bear in mind, however, that not all women will want to take up their entitlements.
Employers should signpost the employee to sources of emotional support. Antenatal Results and Choices (ARC) provides a range of specialised bereavement support services for parents and the wider family. Although counselling services may be available at the workplace, it is important that the practitioners involved are confident and competent in working with people who have gone through TFMR.
Ongoing concerns at work
For most women, the raw intensity of the grief of the early weeks will gradually subside. However, employers should be aware that there can be difficult moments along the way, which may need sensitive handling. The proposed original due date for the baby will be significant for many, as will the time when the employee was planning to start their maternity leave.
Pregnancy and baby announcements at work can be especially tough. Women can struggle with their feelings of hurt and resentment and find it difficult to share the joy of others. This can be challenging for employers as no-one wants a work environment where everyone is treading on eggshells. Encouraging sensitivity and giving the bereaved employee the chance to talk and offload in a one to one meeting with their manager is likely to be appreciated.
Partners are affected too
While it is true that the woman has to endure the physical experience of TFMR, her partner has also experienced a bereavement. As well as the grief of the loss of the hoped-for baby, partners have also had to watch the person they love go through a harrowing physical procedure. Some will have felt powerless to help.
Partners can sometimes neglect their own emotional needs because they feel that going through the physical procedure is so much worse. The reality is that they will also need to take some time away from work and be treated with sensitivity when they return. For some partners, part of their coping strategy can be returning to their job fairly quickly but this does not mean that they will be able to function as they usually do.
Some partners may be reticent to talk about their feelings. No-one should be forced to talk if they don't want to, but they will usually appreciate someone at work giving them the opportunity to do so if they wish or at least checking in on them.
Restoring hope and subsequent pregnancy
ARC has supported women and families through TFMR for over 30 years. It is not something that people "get over" or "move on" from, but ARC's experience and research evidence tells us that the vast majority learn to live with their loss and move forward positively with their lives. This will often involve a successful subsequent pregnancy. However, it is important that those around them - including employers and work colleagues - do not assume that a new pregnancy means that all is now well.
"It is important that those around them - including employers and work colleagues - do not assume that a new pregnancy means that all is now well."
Jane Fisher, Director at ARC
Of course, after a TFMR, pregnancy will never be the same again for the woman or her partner and in particular the build up to scans and other tests can provoke high levels of anxiety. Complex emotions can emerge when they reach the point in pregnancy when the previous diagnosis and subsequent loss occurred. They may need more tests or scans than usual to help them to manage their anxieties.
For women and their partners who have been through TFMR, support and sensitivity from those around them (including work colleagues) can be one of the most important components in enabling them to cope and to restore their hope for the future.
For confidential support and non-directive information, parents affected by TFMR can call ARC's helpline.