The agony of choosing termination for my baby who had foetal anomaly
I’m looking at my name, handwritten in capital letters, neat as a button. Considering asking for another form to rewrite it, make it shakier. “Foeticide,” the doctor is saying. I can’t stop thinking about someone filing this consent form away, looking at my name, all straight lines and breezy curves. Just another Monday.
Then I lie on a bed, see my baby on the ultrasound for the last time, an incomprehensibly long needle in my peripheral vision, feel a strong kick and then nothing but the doctor squeezing my hand.
Five days earlier my three-year-old son blew raspberries on my swollen tummy, told the baby he loved her and made her a “bed” in his room. I complained about achy hips, moaned to my husband about people telling me I already looked ready to pop. We watched TV and I grabbed whoever’s hand was nearby to feel the baby kick. Then I walked into the hospital for my 20-week scan, expecting nothing more than the inevitable dance around whether we wanted to know the gender.
When the sonographer said there was a problem I felt my face tingling, heard my heart beating in my ears and had a sense that nothing had ever really happened in my life until this point.
The 20-week scan is called the “anomaly scan”. Its intention is to check that the baby is developing properly, but the chances that it isn’t are slim. When the possibilities are thousands to one, it’s no wonder most couples focus instead on this scan being the opportunity to find out the gender. But according to the charity Antenatal Results and Choices (ARC), 40,000 families in the UK will be told each year that there is a chance their baby has a genetic or structural condition. This will often happen at their anomaly scan, when names have been chosen, tummies are swelling and babies are kicking.
We were told our baby had a congenital diaphragmatic hernia (CDH); her diaphragm hadn’t formed completely, resulting in her internal organs clustering in her chest. Her lungs wouldn’t develop properly and, if she survived until birth, there was a chance her life expectancy could be measured in single figures, a significant portion of it spent in hospital. CDH is a condition with many different outcomes. There can be mild cases and severe cases. It can sometimes be difficult to predict the impact until birth.
The two days between the scan and meeting our consultant were filled with searches. Medical journals, first-hand experiences, newspaper articles. Lists were made of questions to ask, procedures that could be done in utero, miracle surgery. When I was looking for answers, trawling through the internet searching for direction, I found families faced with the same decision as us. They had proceeded with the pregnancy; couldn’t bring themselves to terminate a baby they already loved. When it came to the other route, there was silence. I tried not to look down, to feel my bump, to ignore my son as he kissed the baby goodnight.
Clutching our questions, we met the consultant expecting to embark upon another round of tests, probabilities, choices. But the only thing in the room was a height measure on the wall. No ultrasounds, no examination tables, no need. Our questions hung limply in my husband’s hands; a life buoy in the middle of the Pacific. In our case the initial diagnosis was devastating enough without the need to check for anything else. We had to decide if we would proceed with the pregnancy.
The void of people discussing termination for foetal anomaly is a silence fuelled by shame and fear. Because it is easier to stand up and say you fought for that little life. Deciding to terminate a pregnancy because the baby is desperately ill is messier. I wondered if I’d be called a eugenicist. I wondered how I’d explain it to people. I asked if I would regret it. But in the end, none of that mattered. What mattered was that this was my child, and I wanted to make sure I had done everything within my power to protect her from suffering. The prognosis was so extreme that this was the only way I could guarantee that.
My husband agreed. We couldn’t continue with our pregnancy. The pain of the decision for both of us was so
big it was almost a physical presence in the room. But there was also relief that we agreed. Then it was straight to logistics. I was to be induced. The baby would probably be born with signs of life, so I could choose to have a termination ahead of the birth, an injection into her heart to stop it beating. I waited for a third option, which never came. This was Friday. The termination would be on Monday.
That weekend I walked around with a baby inside me who I knew would be dead in three days. As I sang my son to sleep she kicked harder than ever, as if making a case for her existence. I talked to her. I told her I loved her. We didn’t tell our son until after the birth, and so he continued to chat away to her as she kicked back and I stared hard into the distance. There was no escape from my body, from the pain and from the guilt.
The two days between the termination and induction we tried to keep ourselves busy. We went to the garden centre and bought a fig tree for our baby. We went to visit a potential school for our son. The receptionist asked when I was due and I said, “Wednesday, but the baby is dead, so… we won’t need a nursery place.”
I started to consider the birth. People who’d had ringside seats to this process told me it would be a lifechanging experience. I would be a different person afterwards. When they said this, the breath caught in the back of my throat in panic. Who would I be, then? Now I was losing not only my baby but myself. When would it happen? And what would be left of me? Would I ever roll around tickling my son again? Would I belly laugh? Would I dance to Taylor Swift again?
The induction was a slow process. We spent a lot of it in the park in the rain. My husband picked me a piece of lavender and I felt like I was seeing it for the first time, marvelling at the interlocking petals, the way it seemed so perfect and miraculous. Back at the hospital I found myself contracting in the corridor of the labour ward in the middle of the night. The primal screams of a woman bounced off the walls, suddenly replaced by the raw cries of a newborn.
The midwife had warned me some mothers in my position were shocked. “They expect the baby to cry… it’s like they forget…” I was terrified. I didn’t know how I would look at her, or hold her. Knowing I had chosen this for her. The fear held up the labour. But when a friend sent me a beautiful, hopeful message, I broke into tears and had the most intense contraction and my husband called for the midwife. She rushed in, pressed a red button and the room filled with people. I wondered why there were so many, because our baby had died. No need for a rush.
I felt a breaking sensation and she fell out of me as I collapsed, eyes squeezed shut, on to the back of the bed into a room of total silence. Then my husband was saying something about how beautiful she was. I turned around and the room was full of women with the kindest eyes I’ve ever seen. Their sadness turned to concern when they couldn’t get the placenta out; I was rushed to theatre where Magic FM played in the background, an epidural was administered and I became convinced I was going to die, shaking so much it felt like I needed to be held down. The doctor’s hands tugged inside me as the last parts of my baby’s support system were removed. Then I was lifted on a sheet to a clean trolley. I looked up at the ceiling. And that’s when I started to cry.
It was a few hours until the sensation came back to my legs and I wanted to wait until then before I met our baby. I don’t know why. Perhaps I thought I might run away with her. The midwife asked if I was ready and then went to a small cot with a lid in the corner of the room. She handed our daughter to me. As I held her at first I cried so hard it made no sound at all. But then I started to really look at her. Her beautiful, rosebud lips. The golden arc of her eyebrows. Her fingers, her fingernails – tiny little replicas of her dad’s. The creases on the insides of her hands. She was beautiful. My sadness was temporarily replaced by wonder. In the moments that I held her, a lifetime of grazed knees, of runny noses, of broken hearts. I was her mother, she was my daughter, and I had done my duty – I had protected her the only way I could. I had kept her safe. In that moment, I felt more like a mother than I ever had.
Mercifully, it’s rare for women to lose a baby once they’ve started showing. But when it does happen even the most insignificant things become hard. It’s a very visible loss, and so chance meetings on the street – getting coffee from the barista who sortof knows you, picking your child up from nursery – become a bit of a minefield. “Aren’t you on maternity leave?! Where’s the baby?!” You explain, and then slope away, feeling awkward for upsetting them. But baby loss happens for many reasons, and it is important that women who have had a termination for medical reasons feel they can be part of a group that mourns the loss of their child without shame, guilt or judgment.
We got pregnant again quickly and unexpectedly. Our 12-week scan took place on what would have been our daughter’s due date. After several tense months, our baby daughter was born healthy, strong, as a double rainbow emerged over London. She was delivered by the same midwives who had helped us through our loss, and we all held each other, crying tears of relief, joy, sorrow and love.
In the end, they were right: I am not the person I used to be. This was life changing. There were times I felt I was at the bottom of the ocean, swimming in the inky black with terrifying creatures springing up at every turn. I have seen things, felt things that live behind a little black door in my mind. But another door has opened. The lavender in the park. My son making my daughter laugh, and the total and utter wonder of how it’s possible and what a miracle it is. And as I dance around my kitchen to Taylor Swift, I thank the universe for what I have, because I know how fragile it is.
I’d done everything I could to protect her from suffering