TfMR – it’s a term nobody wants to have to be too familiar with and a topic we so rarely discuss: a termination for medical reasons. This year, Capsule reader Charlotte and her husband Greg had a TfMR, and they’re bravely sharing their story in the hopes it will make other families going through it feel less alone.
Charlotte and her husband Greg thought about getting pregnant for years. After much research, they decided that they would start trying in one year, and would spend that year preparing their bodies. They both did yoga, exercised, gave up coffee and alcohol, got their blood tested and tried everything they could to get pregnant and have a healthy baby.
So, they were overjoyed when two months into trying, Charlotte took a pregnancy test and it was positive.
Their plan to keep it quiet until the 12-week mark quickly went out the window – by week six their families knew, and by week eight so did their friends. At their first midwife appointment the possibility of doing an amniocentesis test first came – that’s the test which screens if a baby has T21, which is the term for Down syndrome. They both agreed that termination would be on the table if it was to be a possibility, but neither thought more beyond that, as the odds were so small.
At the 12-week scan Charlotte and Greg saw their happy little baby jumping across the screen.
“The baby was doing flips,” Charlotte says. “It was all very special and exciting.” The sonographer did the nuchal fold measurement – one of the first signs of Down syndrome – and everything was measuring perfectly. “We had officially made it to the post 12-week ‘safe zone’ and it was going to happen! So that’s when we officially shared the scan picture with everyone and started to openly tell whoever.”
And then, everything changed.
Charlotte, who was now 15 weeks pregnant, got a call 10 days after the scan. It was from her midwife who had difficult news – the scan results showed their baby had a one in nine chance of having T21. The conversation, Charlotte says, was mostly a blur but she remembers the midwife telling her that “some people choose to terminate the pregnancy”, and that the next step was an amniocentesis.
She drove home and called her husband. “And that’s when I started crying,” she says. That night they started Googling and decided to book a NIPT test, which is a more non-invasive test than the amnio. But when that NIPT test also came back with a 99% accurate positive reading, they booked in for the amnio – a 100% accurate diagnostic test.
“Getting the amnio was horrible,” says Charlotte. “I felt so, so guilty. We pretty much knew this baby had T21 and that we would terminate. And here I was, sticking a needle in, next to it. The doctor had to do it twice because it didn’t work the first time. It was a big needle. I didn’t watch. I felt like the absolute worst mother in the whole world… I prayed to the universe to have a miscarriage so I didn’t have to face a decision. I felt like a monster for thinking like this.”
In the weeks between finding out the initial test results and the scheduled termination Charlotte and Greg threw themselves into research – about what life with a possibly severely disabled child would be like. “I read about mothers who had to watch their babies have surgeries when they were just days out, about the statistics of heart problems, childhood cancers, early onset Alzheimer’s,” Charlotte says. “There was no way of knowing how severely our baby would be affected until it was born. Our baby had full T21, which means all the cells are affected.”
“We thought about how we as a couple would cope – how long would the baby live? Would one of us need to give up our careers to look after the baby? What would the child’s life be like? Would they be high functioning and able to have some independence – the minority of cases were like this, we were told – or would they need care for the rest of their life?”
The big question, Charlotte says, was what kind of life they would want for their child. “During my research a lot of parents said things like, ‘our child has made us better people,’ but is it right to bring a child into the world, if you know it’s going to suffer and struggle, just to make you a better person?’”
The contradiction of wanting to save her child from suffering and the feeling that she needed to let this child go was violently opposed by her motherly instinct of protection, Charlotte says. “It was like being ripped in half from the inside.”
When the results of the amniocentesis tests came through on a Monday morning, their OB didn’t beat around the bush. “They said to us, ‘I’ll get straight to it, your child has Down syndrome.’” They were scheduled in for a termination swiftly for that Wednesday, with Charlotte being required to kick-start the termination with pills on that very day.
“It all felt so sudden and just surreal… I felt helpless, numb, and like I wasn’t in my body.” Charlotte had to sign a consent form, but she was shaking so hard she couldn’t write properly, she remembers. “Then I got the pills that would end my baby’s life. I sat in the OB’s office, and I couldn’t take them. Eventually, they said I could take them at home.”
She and Greg headed home, with Charlotte’s parents joining them for support. “We sat outside with the pills and a glass of water, my husband and I were both crying so much,” she says. “Eventually, after a few hours, I managed to take them. Afterwards, I felt relief – as well as shame, guilt, grief and all the rest. But in that moment, mostly relief. The hardest part was over.”
The next night, Charlotte got the urge to make something for the baby – making it a little blanket and bracelet and packing them in the hospital bag. The next morning was the termination appointment, where Charlotte had to take pills to induce labour. The pain was intense, she says, and the pain meds didn’t seem to help, but eventually the baby was born. “I felt a huge relief after it was done, mostly because I wasn’t in pain anymore, but I also felt a sense of peace, like our baby was in a better place. They would only ever have known our love and peace.”
Afterwards the nurse asked if they wanted to see the baby. Before the birth, Charlotte and Greg had felt they didn’t want to, but now they knew they did. “The nurse took the baby away to clean it and came back with a white box,” Charlotte says. “We spent time with our baby, it was really sad but I’m glad we did. I put the blanket and bracelet I had made around it.”
When Charlotte asked Greg if they should take a photo of their baby, Greg didn’t want to and at the time, she agreed. But now, she says, it’s a major regret. “Turns out it’s completely normal to take photos of your baby, but no-one really told us. I found out through talking to other mums online afterwards.”
They also ended up naming the baby during that time as well, before the baby was removed to be cremated. “I’m so glad we have our little one’s ashes now,” she says. “Maybe we will spread them one day, but for now I can’t imagine ever letting them go.”
A week after the birth, they rung the midwife to find out what gender their baby had been. They had been a little girl.
Finding Support
When Charlotte and Greg found out the initial test results, most of their family and friends knew they were pregnant. So then began the battle of what to tell people. At first, Charlotte said she was so scared of judgement that they swore never to tell a soul. But eventually, they told their immediate families. “They were all so supportive, which we were so relieved about.”
After the birth they told some friends that she had miscarried, but it didn’t make things easier. People shared their own miscarriage stories with Charlotte, which she says was ‘lovely’ but made it harder on her. “I felt like I was lying to everyone, dishonouring my baby by not saying the truth.”
While some people know that they had a termination for medical reasons, Charlotte says she couldn’t bring herself to say that T21 was the reason. She wishes she could have been honest with more people but “shame, guilt and fear of being judged held me back.” In the future, she thinks she might tell more friends the full story but the uncertainty of who might respond how makes it hard.
She and Greg were both on the same page the entire time and both told their immediate families who were a wonderful source of support, Charlotte says. Their GP also referred them onto a therapist, who was also helpful, as were online support groups. She recommends endingawantedpregnancy.com, tfmrmamas.com and thetfmrdoula.com. “Being able to talk to people who have been through this is so healing. It has really helped me work through my grief, trauma, guilt and shame. It made me feel not alone and safe.”
Charlotte knows that when presented with the same test results, there are couples and mothers out there who would have made a different decision. “This was my story – the factors I considered and what I did. But for others who make the opposite decision, their reasons and considerations are totally valid. I don’t think there is an ultimate right or wrong decision to make in this situation. Both decisions are valid and made out of love.”
Her biggest reason for sharing what she and Greg went through is to help couples facing this decision, either before, during, or after, know that they are less alone.
“For parents going through this right now, here is what I want you to know: You are a good, loving parent. It’s really shit and unfair, and it’s not your fault that you and/or your baby is so sick. You are doing the best you can with the information you have. You deserve compassion and empathy. You deserve to have good things happen to you and I am so, so sorry you have to go through this.”
“You will get through this, and it does get better. You owe your story to no one, but talking about it with a trusted friend/family member, therapist or online group really, really helps. It really feels like the loneliest experience in the world, but you are not alone. We are here and we understand.”
