Rosie’s story
I had my 20-week scan on a Friday. My husband and I were expecting everything to be fine. I had started to feel movement, although it didn’t feel like ‘bubbles’ as people had explained to me, and there had been some slight cramping. My midwife assured me it was all normal.
At the scan, the sonographer immediately turned the screen to us to show us the heart beating but then quickly moved the screen back towards her so we couldn’t see anymore and was quiet. I knew something was wrong. After a while, she asked me if I had experienced any leaking. I replied that I hadn’t, and she went onto explain that there was a lack of fluid and she was struggling to see anything on the scan.
We were sent to see a consultant who explained there was a lack of amniotic fluid which could mean one of two things: that my waters had broken or there was a problem with the baby’s organs, specifically the kidneys. We were referred to Foetal Medicine.
The following Tuesday we went for our appointment at Foetal Medicine. I had spent the whole weekend researching and we were very realistic about the most likely outcome. I knew what to expect if we got the worst news and we had already made the decision to terminate the pregnancy if that was the case. Our appointment at Foetal Medicine confirmed our worst fears. Not only was our baby diagnosed with bilateral renal agenesis and Potter syndrome, but she also had a sizeable hole in her heart.
Whenever I talk about my TFMR, I always feel the need to explain our decision. The condition my daughter had is called bilateral renal agenesis and affects 1 in 5000 pregnancies. It is a condition termed ‘incompatible with life.’ It meant my daughter’s kidneys never developed and as a result, there was no amniotic fluid. In the first trimester, the mother produces amniotic fluid. After this time, babies make their own. They swallow the fluid to develop their lungs and create more from urine. Because my girl couldn’t do this, her lungs didn’t develop properly. She would never be able to breathe. Babies who are born alive with this condition suffocate to death. We did not want this for our daughter. Although she was born alive, at 21 weeks and 3 days, she had no consciousness and passed peacefully and unaware in her mother’s arms.
There was no choice. My baby was always going to die. The only ‘choice’ I had was when and how that was going to happen.
I was given a tablet, which was put into my hand by a nurse. I had to take this tablet to end my pregnancy hormones. I instantly started shaking and tried to hold back the tears. The nurse put the drink in my other hand, and I took the tablet. I remember pausing, holding the tablet in my mouth, trying to prolong the inevitable. As soon as it was swallowed, I broke down. That night, and the next day, I could still feel my baby moving. Two days later I went into hospital to have my baby. I was induced into labour and gave birth to my daughter at 16:45 on 1st July 2021. She died about 15 minutes later.
To be referred to a specialist clinic, a mother must suffer three losses. I have since had two miscarriages and have been told I don’t fit the criteria for referral because my daughter was a TFMR. Bilateral renal agenesis occurs in 0.02% of pregnancies. Miscarriage in 25%. Recurrent miscarriage is 1%.
My experiences have taught me that there is not enough support for women like me. I feel abandoned by medical professionals and have been made to feel guilty by some baby loss communities for having a TFMR. I don’t see termination for medical reason as a ‘choice.’ I didn’t choose for my baby to die. I wanted her, I loved her. It is because of that, that we made the decision we did. There was no choice. My baby was always going to die. The only ‘choice’ I had was when and how that was going to happen.