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Forty-eight hours earlier I had been a happily pregnant woman who had simply booked a reassurance scan. Now I had the doctor’s words: “There is nothing we can do. You need to terminate the pregnancy” ringing in my ears.
A Termination for Medical Reasons (TFMR) is the heartbreaking decision parents face if a baby is diagnosed with a serious condition that poses a serious threat to your life or the baby’s if you continue with the pregnancy. It is estimated there are 5,000 TFMR in the UK each year.
I was 18 weeks pregnant with my first baby. A baby me and my husband James desperately wanted. A baby which had taken three years, crippling endometriosis and six cycles of IVF to create.
I was told I could only conceive via IVF after losing my fallopian tubes to severe endometriosis. However, IVF doesn’t guarantee a baby. One doctor said my odds were lower than 3 per cent, but I pushed forward, refusing to give up on my ovaries at the age of 32.
Three complex surgeries later and against all the odds, in February 2020, we got a positive pregnancy test after our sixth cycle of IVF.
Despite being cautious not to get my hopes up, at 16 weeks I let myself feel excitement for the first time. But it was quickly replaced with a niggling sense of terror I couldn’t shift. From the beginning I had an unexplained feeling that the pregnancy would end at any moment. I’d spoken to my midwife about the fear, but she laughed off my worries. To put my mind at rest, I booked a private reassurance scan at 18 weeks.
The scan showed a baby boy, but the sonographer raised a concern about the size of his bladder. I immediately called my midwife. She dismissed my concerns, and I was asked to wait until my anomaly scan.
Driven by unparalleled fear, I took matters into my own hands and secured an appointment with the fetal medicine team at my hospital 48 hours later. The scan revealed the baby had severe posterior urethral valves (PUV), a condition found only in boys which affects the development of the kidneys, the bladder and ureters. Without free-flowing fluid, the heart and lungs are unable to develop.
The doctor explained I would need to terminate the pregnancy. She couldn’t give me an explanation as to why it had happened. She couldn’t give me an alternative. She handed me a card with the number to an abortion clinic and told me to arrange an appointment. Like she was recommending a hairdresser. Just like that, I was sent on my way and our world came crashing down. The thing I was most scared of had happened.
Due to my complexed gynaecological history, the suggested clinic was unable to assist and I was left with the challenge of arranging my own TFMR.
It was three weeks of hell from diagnosis to termination; clouded by desperation, guilt, grief and what-ifs. I can’t be entirely sure what happened in the days that followed; it’s as though my mind has blocked the trauma.
On 22 May, I lay in hospital alone and scared. The surgeon played classical music as I felt the general anaesthetic run through my IV. He assured me the baby wouldn’t feel thing.
That day we didn’t just lose our baby. We lost everything we had worked so hard for over the last three years. The blood, sweat and tears to pay for £53,000 worth of IVF, the hospital admissions, the surgeries and scars, the monthly crippling endometriosis pain, the endless trips back and forth to clinics, over 300 IVF injections, the hundreds of scans and blood tests.
Up until this point it had all been worth it, but when I woke up it would all be gone. We were back to the beginning, but this time more battered and bruised than ever before and filled with grief.
Seven weeks later, I was hospitalised with an ovarian infection which led to sepsis. Our loss was worsened by the fact I almost lost my life too.
I soon realised that the only choice I had control over was how I bounced back. I could sink, cry until my eyes dried up, think ‘why me?’ and live in a world of despair. Or I could pick myself up, share our story to help others and start all over again. I chose the latter. Today, I speak openly and honestly about our experience to help others feel less alone and break the silence around TFMR.
Karen Burgess, founder of baby loss counselling charity Petals, says: “The responsibility of making a decision to terminate a much-wanted pregnancy weighs heavy for many couples resulting in feelings of guilt and shame. The consequences of such feelings often mean couples withdraw and feel unable to talk openly about their pregnancy and their subsequent loss.
"We do know, however, that the parent’s voice is key to bringing change, so finding the courage to share experiences of TFMR in all forms of media can really make a difference.”
Tyla is marking Baby Loss Awareness Week with a new editorial series, Living With Loss
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