We lost our daughter Nefi in August 2019 following a TFMR (termination for medical reasons) when I was 34 weeks pregnant. We had excellent care in London from fetal medicine consultants and a geneticist. I have since given birth to a healthy, happy baby boy in August 2020.
A problem with our daughter’s joints was first picked up at our 20-week scan. Serious concern regarding her lack of movements was not raised until our 28-week scan. Over the course of the next six-weeks we underwent various tests to investigate her arthrogryposis (joint contractures), including an amniocentesis (genetic testing), an MRI scan of her brain and weekly scans. Over this period her prognosis worsened. We were initially counselled by the fetal medicine and neonatologist consultants that our baby would be physically impaired. This later developed to severely disabled, and by week 33, we were advised that the severity of her contractures indicated that if she be born alive, she would not be able to breathe and she would need to be ventilated (using a life support machine). We could not expect her to be able to enjoy any quality of life. Whilst the scans confirmed a severe muscle disorder, the consultants and geneticists have been unable to conclusively identify the cause of her disorder.
It was during the last couple of weeks of this period of testing that the consultants introduced the option of termination. We reached out to ARC for help and were lucky to have two in-person meetings with the Director, Jane. I had never heard of TFMR before. I remember asking Jane if this was something that people did so late in the pregnancy, or would we end up being reported in the tabloids. We were reassured that this is sadly something that women and couples often go through, and that more often than not when you hear of a late miscarriage, it is a TFMR. Often, women feel unable to tell the truth regarding their loss. Most importantly, it was Jane that made me understand that in ending the pregnancy, we were taking on our daughter’s pain – carrying it so that she would not have to.
ARC were able to counsel us in what to expect of the delivery, how to approach meeting our daughter and in processing the grief over the following months and years. I delivered our daughter Nefi naturally, following a procedure to stop her heart and an induction. We were able to spend time with our daughter and my mum and sister were able to come into the hospital and hold her. The hospital arranged for a cremation for our daughter and my husband and I attended a ceremony led by a priest who we had chosen. We then buried our daughter’s ashes with those of my Gran’s near our family home in Scotland. It helped that during this ceremony a rainbow appeared, and the lovely vicar paused the ceremony for us all to look and appreciate its beauty.
I was lucky enough to be able to receive over a year of therapy and take 5 months of maternity leave off work. We were supported by family and friends and during this time I found it helpful to exercise, read books by novelists that touched on grief, and to do silly, easy things with my husband, like go bowling. It has been important to me that friends and family have been able to say her name and honour her existence, and I was lucky to be surrounded by people who felt confident in doing so. When our son grows up, we will talk of her as part of our family who we will always miss. Whilst the pain will never completely go away, I am now able to manage the grief and days are far, far brighter than in those early months.
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