When I found out that I was going to become a mother, I was overcome with joy and excitement.
My husband and I were delighted and began discussing maternity options, car seats, baby carriers and cots. Like all expectant parents, we started preparing for our new arrival, adapting our lives in anticipation, imagining who our baby would be and what our lives would be like with them.
I could not wait to become a mother and yet it was through a barrage of tears that I packed my maternity bag; asking questions I never thought I would need to ask. I packed all the usual items such as teddy bears, baby blankets and an outfit for our daughter. I also packed nightdresses, maternity pads and a tens machine for labour. However, amongst all these were items you wouldn’t typically expect to find in a maternity bag such as our medical files, passports, accommodation information, hospital correspondence, directions and a memory book.
The day I had waited for with such excitement and anticipation had finally arrived; I was going to finally become a mother. But now all I felt was grief, trauma, isolation and fear. My daughter was dying inside me. She would never be born alive. I could not save her and it was killing me. The one act of mothering that I could do as her parent was to ensure that she did not suffer and this is how we ended up in the care of the Foetal Medicine team at Liverpool Women’s Hospital.
While my early pregnancy was like any normal pregnancy a midwife raised concerns as to the wellbeing of our daughter at a 12-week scan and arranged to carry out further blood tests and follow up scans. It was at our next hospital appointment that we were given the heartbreaking news that our baby would not live. Our baby had stopped growing. We were told that she had a very rare chromosomal condition called Triploidy. This meant she had a complete extra set of chromosomes; 69 compared to the usual 46. Not only was she extremely underdeveloped for her gestational age, but her lungs, chest and heart were also comparatively smaller than the rest of her body. This meant that her heart would never survive labour, she would never be able to breathe and she would never be born alive. It was, however, predicted that I would likely have an imminent miscarriage.
Over the proceeding weeks, further diagnostic tests confirmed our daughter’s condition as did foetal medicine experts across Ireland, the UK and Australia; our daughter had complete triploidy. The severity of the variant was fatal, no intervention could save her. Our daughter had what is medically classified as a Fatal Foetal Abnormality (or FFA). The team of medical experts assigned to our care explained that if we wished to stay in the Irish hospital system and under their care, the only maternity option available to us was for me to remain pregnant and to wait for our daughter to pass away naturally. If we wanted to choose a different care path, we would have to leave our home, our families, our support network and our country.
I was overcome with grief and I could not accept that I was going to lose my baby. I wanted my daughter to be born at home under the team of foetal medicine experts at the maternity hospital that we were attending. I could not contemplate any other scenario and I could not actively participate in her loss by seeking medical intervention to end my pregnancy. I secretly hoped that they were all wrong. That even though she would not live, she would survive labour; survive long enough for me to hold her, to kiss her and tell her that I loved her.
So, we waited. We waited 14 torturous weeks – 14 weeks where I could not participate in any aspect of normal life and finding myself in a most unnatural state of being. I was physically pregnant with my body telling me that I was having a baby. However, my mind was wishing for my pregnancy to end as I grieved for the baby dying inside me.
As the weeks progressed she began to collect fluid on her brain, her lungs and her colon. All of these were signs of her demise. While the team charged with our care would no longer guarantee that she was not in distress in utero. I learned that if her heart was still beating when I went into labour, it would be the trauma of labour that would cause her to pass away. If she somehow survived labour, she would have a fit and pass away gasping for breath. Both of these experiences would be extremely distressing for her.
My physical and mental health was also suffering. My blood pressure had started to rise and I had begun to show signs of early preeclampsia; a condition associated with triploid pregnancies that continue into the third trimester. The condition could develop very rapidly and depending on its severity could even be life-threatening. I was, however, told that unless my life was in imminent danger that they could not induce my labour.
It was during this time that I came to see abortion as a form of care for both my daughter and I. As a mother, I felt that I had to take responsibility for my daughters’ wellbeing and ensure that she did not suffer. I also felt that in this instance I had to protect my health and my ability to have a family in the future. This is how we made the decision to travel to Liverpool Women’s hospital.
To ensure that our daughter felt no pain during labour or birth, the medical team put her to sleep with a foeticidal injection into my umbilical cord before they induced my labour. So, it came to be that in consenting to this procedure, I got to perform an act of mothering and after a compassionate induction of labour, our daughter, Rose Sophia Hazimee, was stillborn.
When we were travelling to Liverpool, I was hopeful that no other family facing a situation like us would have to travel abroad to receive the maternity care that they needed. Clare Daly had put forward a bill to amend the Protection of Life During Pregnancy Act to allow for terminations of pregnancy in cases of FFA. The day Rose was stillborn in Liverpool Women’s Hospital was the day that Clare Daly’s bill was defeated by 104 to 20 votes.
Our government had been given the opportunity to care for families like mine and yet they would continue to turn their back on us in our time of greatest need. It was as if our lives did not matter and the Irish government was content to continue punishing pregnant women. We had travelled by ferry to Liverpool as we had wanted to bring our daughter home with us. However, when she was born, she was very tiny and fragile and the medical team advised us that she may not survive the journey home intact.
It was put to us that it would be more respectful to her, to leave her in the care of the midwife who had delivered her and have her cremated in Liverpool. So, I found myself returning home without my baby to a country that no longer felt like my home. Like so many women before me, I was forced to leave Ireland pregnant and found myself returning without my baby.
In the months that followed, I attended support meetings run by this group … By participating in these meetings and hearing the stories of others, I began to see the many ways in which Ireland’s abortion ban impacts women, couples and families like mine. Heart-breaking situations are made more difficult, traumatic and dangerous because women are denied access to abortion health care in Ireland. This is when I decided to share my story publicly and join Termination for Medical Reasons Ireland (TFMR) a sister group of LMC which campaigned for a change to Ireland’s ban on abortion.
In sharing my story, I hope that other women and families who receive a diagnosis of an FFA will not feel stigmatised and isolated.
A portion of an article that first appeared in the Irish Times.
