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How to talk about termination for medical reasons

Parents who experience TFMR – or termination for medical reasons – say they face stigma and a lack of support around making the heartbreaking decision to end their pregnancy.

Of all the types of pregnancy loss, Termination For Medical Reasons (TFMR) is one of the least talked about, understood or supported types of loss and the only one to come with the unique and specific mix of horror, judgment and silence.

According to The Pink Elephants Support Network, TFMR is “when a pregnancy is terminated due to a chromosomal, genetic or structural fetal abnormality, or where continuing the pregnancy would risk the health or life of the mother.”

Unlike miscarriage, stillbirth and infant loss, TFMR is not spontaneous. It is categorised as an abortion, a confronting way to classify needing to end a very much wanted pregnancy. 

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Being that TFMR is a choice, it is often completely left out of discussions and support around grief and loss. For those who have endured a TFMR, it is one of the most difficult and traumatic experiences of their lives and one in which most did not feel like they had any choice at all.

According to gynaecologist and fertility specialist Dr Katrina Rowan, “Most of the time these terminations are done because the baby is not likely to live for the duration of the pregnancy or may have a very short life after birth or a very low quality of life.” 

Red Nose Australia states that each year in this country there are 110,000 miscarriages, over 2200 stillbirths and 600 babies die within the first 28 days after birth. In Australia there is no standardised national data collection on abortion, and as TFMR is considered abortion, no statistics on TFMR nationally.

“It is quite difficult to get accurate statistics,” says Dr Rowan, “as most states in Australia don’t report accurate termination of pregnancy data and they don’t separate the reasons for terminations.”

South Australia is the only state to annually collect and publish abortion data and they do include TFMR, which accounts for four per cent of abortions in the state. With an estimated 88,000 abortions nationally per year, one could guesstimate that there are about 3520 TFMRs annually. This places TFMR as more common than stillbirth, yet hardly anyone knows what it is, much less has an understanding of it unless they have had the misfortune of experiencing one.

Two months ago, when I was 12 weeks pregnant I became one of the unlucky. Our non-invasive prenatal test (NIPT), a blood test that screens for certain chromosomal abnormalities, revealed our baby was at ‚high risk‘ for a genetic disorder that would result in death either in the womb or within a few days of being born.

We were faced with the no-win ‚decision‘ to let nature take its course or actively let our much loved and wanted baby go. It didn’t feel like a choice at all. Even though we knew TFMR was the only thing for us to do, our active role in it added trauma to the heartbreak.

Like me, Jacinta, 31, found out at 12 weeks that her baby had Trisomy 18 and had a dilation and curettage (D&C) at 13 weeks. She chose the surgical option for her mental health, not able to bear the thought of going into the birth and labour ward where she would be surrounded by women going home with healthy babies. We were both early enough in our pregnancies to be able to choose surgery, a fact for which I am eternally grateful. 

Michelle, 40, didn’t have that choice. Having had a ‚low risk‘ non-invasive prenatal test (NIPT), it wasn’t until she was 20 weeks that she was alerted to there being something very wrong with her baby. By the time all testing was done, she was 25 weeks and her only option for TFMR was induction and delivery.

Having to make the decision to terminate for medical reasons already puts parents in a nightmare situation, then women have to endure the physical process of termination and for some, that process adds even more complexity.

Sarah, 38, who underwent a TFMR at 15 weeks after discovering significant issues with her baby’s heart, found the administration surrounding her termination traumatic. Being a public patient for the procedure, the “lack of continuity of care” was very difficult.

“I really needed to see a friendly face, someone who knew my back story. I was sick of having to explain to everyone what was wrong with the baby and why I was choosing to do this.” Due to Covid restrictions, she was without her partner on the day of the procedure and was there from 7am until 7pm, due to being the last on the day surgery’s list.

As she was signing the final paperwork to go into surgery, she realised no one had asked her what she wanted to do with her baby, precipitating the need for a “traumatic conversation” in which she was made to feel “a bit crazy” for wanting to take her baby home.

While how you are treated and the quality of information you are given when you are going through the decision and then the process of a TFMR is important, just as important is what happens post. 

Many women receive invaluable support through organisations like Pink Elephants, Bears of Hope and Red Nose, and podcasts like TFMR Mamas, Time to Talk TFMR and The Worst Girl Gang Ever, while others fall through the cracks because they aren’t given the resources or are perhaps too distraught to access them.

Kirsty, 31, who underwent a TFMR at 17 weeks due to her baby’s severe brain condition, was lucky enough to be supported by bereavement midwives who called her regularly post-TFMR to check on her mental health. She was encouraged to seek help, and when they could see she was struggling to book an appointment, they persisted until she did.

The support you receive post-TFMR is crucial to healing, although the taboo surrounding it can create a stigma which sometimes results in parents staying silent about their experience or altering how they talk about it to make it more palatable for others. 

Jacinta’s obstetrician suggested she tell people she lost the baby, not that she had a TFMR, whereas Michelle feels the need to stress the severity of her baby’s condition to justify her TFMR and sometimes even says she had a stillborn. Kirsty let some family members think she lost her baby by miscarriage, as she felt she would be judged harshly if they knew the truth.

“The two terms people know most are miscarriage and abortion,” she says, “and you don’t really fit into either of those categories and the one you do fit more into that makes logical sense is abortion.” She prefers the term ‘compassionate induction’, which represents the truth more: “You’re relieving them of future pain and suffering that was inevitable.”

It’s tough, there is no script for this. Silence surrounds TFMR because it’s so awful that the thought alone is enough to stop anyone wanting to even think about it, much less talk about it. In the absence of knowing what to say and how to offer support, people often don’t say anything. But the problem with staying silent is that it doesn’t help with healing. 

In recognition of the importance of breaking the silence and raising awareness of and support for pregnancy and infant loss, October 15 is Pregnancy and Infant Loss Remembrance Day and October marks Pregnancy and Infant Loss Awareness Month. It is a time for people to share their stories to shine a light on this often isolating and misunderstood grief. While speaking about our loss is difficult, it can also be cathartic, and an important part of the healing process.

Both Jacinta and Michelle find solace in speaking about their children. Jacinta and those in her life speak about her baby often, as “she did exist and she definitely left a mark on us.” Michelle finds comfort in speaking about and visiting her child. Both named their babies.

For women who already had children when they had a TFMR, they speak of how hard it was to be present for those children in the immediate aftermath, but how much they needed and appreciated them. Sarah recognises she was one of the “lucky” women who already had children when she had her TFMR, and a miscarriage prior. “I have been able to move on in a way that I don’t think I would have if those were my first experiences of having a child.”  

Kirsty, who did not already have a child when she experienced her TFMR, was tormented by the thought that she had to let go of her only child and didn’t know if she would “ever be a mum.” Sarah thinks every single day “about the child who isn’t here as well as the ones who are.”

For me, and others who have had to face a TFMR, you never forget that you were and always are a mum to this baby. While the grief changes us forever, compassion, understanding and being able to speak about our experience without shame or judgement, go a long way in the healing process.

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