Firstly, for those of you who are not aware of the medical terminology, as I was not, TMFR means termination for medical reasons. Although it's called a termination, I see it more as a compassionate ending of life. I, like many women, went into labour and gave birth to a baby who was born sleeping. Parents who find themselves going into hospital knowing they will have a stillbirth doesn't make what awaits them any easier. As with all baby loss, TFMR is extremely complicated, and it can't be explained by a four-letter acronym.
For the rest of this blog post, I will refer to the medical term TFMR as compassionate induction, which is a term many women now use to explain their own experience and one that I feel is more appropriate.
I’m Jane, and in Feb 2020, my partner and I had to make the most painful decision of our lives when we decided to have a compassionate induction. In a moment, we both met and said goodbye to our beautiful baby boy, whom we named Archie, which means brave (and he was).
Apart from terrible vomiting throughout my pregnancy, nothing else had been a miss, until I reached the 19-week mark. I went in to get my cervix checked as the medical team were concerned that I might have an incompetent cervix. It seemed like a bad joke, as if it was bad at filing or something.
On this visit, the person conducting the scan noticed something odd with Archie's skull and I was told to come back the next day to see a specialist. Over the next 2-weeks, I had 2x more scans, blood tests, an MRI and an amniocentesis procedure, where they test the fluid around the baby.
Finally, the medical team made a prognosis that Archie had a rare genetic condition that would most likely kill him before the pregnancy came to term, at birth or within hours or weeks of being born. It wasn't until 8 months after Archie’s death that we received the post-mortem results showing they were correct in their diagnosis. We then had to accept and come to terms with the devastating news that I was a carrier of a rare genetic condition that had caused Archie to be ill and that any male babies I went on to have would have a 50/50 chance of having the same condition.
If anyone reading this is in a similar situation I would advise counselling as it really helped me to come to terms with this and accept that it’s not my fault; we have no control over our own genetic make-up. But it took several months and lots of therapy to accept this and to stop blaming myself.
The condition that Archie had caused his brain to swell and fill with fluid, preventing it from developing. It left him with 95% brain damage. In a way, the news justified the decision we had made to turn off Archie’s life support and let him go to sleep. Yet, signing a piece of paper to end my first and only pregnancy so far, was the most painful thing I have ever done. It was a decision that took a long time to reach.
The fact that parents of compassionate induction have a choice at all makes their baby loss a taboo within the baby loss community. So much so that compassionate induction isn't included in UK baby loss statistical data. However, Tommy's*, ARC* and Petals* are looking to change this and more support is now being sought for parents who have had compassionate inductions. As the charity Tommy's states, there are around 5,000 TFMR pregnancies in the UK each year, which equates to10,000 parents going through an experience like ours. To put this number into perspective, according to the Office of National Statistics in 2019, 2,522women suffered a stillbirth.
There is no nuance allowed in the term TFMR and because of this parents who have been through the experience often find it hard to explain and feel ashamed to admit it was a choice.
I felt worried that society would judge me and that people might say hurtful and hateful things to me when I was already heartbroken and at my most vulnerable.
Even my baby loss counsellor advised me to be wary of telling people all of the details. She said as you gave birth to your baby that's a stillbirth, so tell people that if you wish as it's not a lie, and they will be more understanding.
But shouldn't we be compassionate and understanding no matter what the circumstances? Any baby loss is a loss, and the pain is just as raw and deep no matter how that loss occurs. Pain, grief and devastation are universal, and we need to stop shaming parents who are faced with painful choices. I want people to know that when your choice ends in the baby you were planning to bring home never arriving, that's not a choice taken lightly.
As a parent, once you have decided to end your baby’s suffering, you may, like me, have to prepare yourself to give birth. However, you also have to accept that your baby won't be alive when they are born, but you have no idea how you will feel or how you will react. It’s a mix of emotions as you’re excited to meet your baby and at the same time scared and upset.
After several hours, endless pessaries and lots of gas and air, Archie was born, and as I pushed him out, there was no sound. The silence was palpable. Even though Ik new he was dead, there is still a part of you that thinks a miracle can occur, and maybe he'll start breathing. When they handed him to me, I was so excited to see him and hold him and tell him I loved him, I forgot he was dead. All I could think was how beautiful he was and how he had his dad's chin and my cheek bones. We put on the little hat my mum had knitted for him, and we were both just in awe of how gorgeous he was. Then, as you wait for him to open his eyes, a part of you dies as you realise that will never happen. I will never see those eyes or hear his voice or watch him grow.
After about5-hours with him, we felt that it was time to go. We had hugged him, held him, taken photos with him and read him a story. After that amount of time, we had come to realise that he was dead and wanted him to be at peace. It's like a switch in our brains had been triggered, and we just suddenly felt an overwhelming sense of loss.
We had Archie blessed in hospital, which was really special and gave us both so much comfort. The Chaplin was a wonderful man, and although I can't recall what he said at the time, it made me feel so much better.
Once we had said goodbye to Archie and left the hospital, we were waiting for a taxi when another couple came out of the lift carrying their baby in a car seat with a giant balloon saying ‘it's a boy!’. I burst into tears. My heart broke all over again.
I left with pregnancy pads and a bereavement book, they left with their son. That's when it finally hit me that Archie would never make it home.
In the weeks that followed, the world was hit by COVID-19, and our loss got swept up with the thousands of other losses across the country. As people lost loved ones, jobs, homes and communities, we were lucky to have a paid counsellor to turn to as you don't want to burden family and friends with your pain when you know they have their own turmoil going on.
Although we were incredibly lucky to have lovely friends and family on the end of the phone or a Zoom call, only me and my partner could attend the funeral. There was no wake, no sitting around together hugging and talking. We were physically isolated, and that took its toll.
If anyone else has experienced a similar baby loss, I advise you to be kind to yourself, accept counselling and give yourself time to be angry and sad, confused and jealous and all of the ugly emotions. Only do what you feel ready to do, try not to push yourself too hard or be cruel to yourself. Most importantly, talk about how you feel and tell people what you need.
Losing Archie has changed me, but over a year since his death, I can finally consider the possibility of getting pregnant again. Although no future child will ever replace Archie, I hope I will one day get a chance to bring a baby home and tell them all about their beautiful baby brother, who made me a kinder, more understanding individual.
By Jane Moscardini
If you are struggling or need extra support you can find contact details of organisations below:
Tommy’s: Tommy's is the largest UK pregnancy and baby loss charity
ARC:UK nationalcharity ARC provides non-directive support and information to parents throughout antenatal testing and diagnosis of fetal abnormalities.
Petals: The baby loss counselling charity