Date of prep: December 2020
Prescribing information and
adverse events reporting
For healthcare professionals only
I am in my 40’s, live in Belfast and am married with one child.
At the end of 2014 I was ecstatic to find out I was pregnant. We had been trying for a while for a brother or sister for my daughter and I had already been through a devastating and painful miscarriage.
At the 20-week scan, which took place a week late due to scheduling problems, I was told that there appeared to be fluid on the brain. It took a week to get a cancellation with a foetal medicine consultant and she carried out an amniocentesis which showed a severe chromosomal disorder.
As you can imagine, this was utterly devastating for us. She gave us some information on the condition and suggested Googling it to learn more about the prognosis, which is that 80-90% of babies with the condition do not survive the birth and the rest die within days or weeks.
We said we wanted to consider termination but the only thing they were able to offer us was a cardiac scan later in the pregnancy as many of the babies have heart conditions.
I have since learned that previously families in Northern Ireland diagnosed with a fatal foetal abnormality (FFA) diagnosis were offered induction however in 2013 the Democratic Unionist Party (DUP) health minister Edwin Poots published revised abortion guidelines which threatened 10 years’ imprisonment for medical staff who carried out abortions that were not in line with the very strict laws in Northern Ireland.
My consultant has since told me that following legal advice on those guidelines, medical staff were not allowed to provide any information that would help anyone to get an abortion, including recommending organisations that could help or advising on the most appropriate procedure.
We felt utterly cut adrift from any medical support and left to fend for ourselves at the worst moment of our lives. At this stage, we only had a week and a half before the 24-week cut-off point. I have since been told that that cut-off may not apply in FFA cases in England, but due to the rule about providing information, I wasn’t made aware of this. So as far as I knew I only had a week and a half from diagnosis to arrange flights and a surgical abortion somewhere in England.
I didn’t know who to go to.
A surgical abortion at that stage of pregnancy is carried out in very few clinics. The clinic told me I would need to book a hotel room for the night after the procedure as it would not be safe to travel.
My husband and I left our daughter with her granny and stayed in a tiny hotel room in England the night before. I cried myself to sleep. We had to pay £1,100 ahead of the procedure, not including the costs of flights and accommodation.
There were complications during the procedure which left me with a punctured uterus and small intestine and I had to be rushed to hospital from the clinic. I had to undergo an emergency bowel section and a hysterectomy, before being moved to the high dependency unit and given 3 units of blood. It was more than a week before I was able to fly home. It was months before I was able to return to work and the experience has taken a toll on my long term physical and mental health. The impact was made immeasurably worse by having to travel so far from home and away from our own healthcare practitioners.
My consultant apologised to us afterwards and explained why we had been given so little information. She said we had received a second-class service because of the law here.
I am devastated that we were abandoned by our own healthcare system at one of the hardest moments of my life. My healthcare decisions should be between me, my husband and my doctor.
I have spoken to a number of elected representatives who have been privately very supportive of my wish that women should not be forced to travel and are trying to work within their parties to move the issue forward.
I see there have been a lot of calls for a referendum but this is the last thing we need. It only happened in the Republic of Ireland because it was the only way to change the measure in the constitution.
And it was a hugely damaging and traumatising experience for many women who had to put their private stories out in public and experience horrific abuse.
The UN CEDAW report has already said that the UK is in breach of human rights by allowing the near-total abortion ban in Northern Ireland. Human rights are not a devolved matter and it is the responsibility of Westminster to legislate on this.
I was in tears of relief when the first 8th referendum exit poll came through last year and I wish with all my heart that a similar change could happen here. But it seems there just isn’t the political will and compassion for the thousands of women who have been left to fend for themselves when they most need help.
We were cut adrift from our health system when we needed it more than ever. But my experience barely even registers on the health records in NI as it happened in another jurisdiction. I have never felt so utterly faceless and abandoned by the government that is supposed to look after me.
I shouldn’t have been kept in the dark by my own medical staff and left to Google abortion clinics. I wanted my baby more than anything, but once we were told the diagnosis, we wanted to get past it and move on. Instead, I was expected to go through months of anguish carrying a dying baby and it seems as though a large number of people in my own Assembly are devoid of any kind of empathy for what I was going through.
The author of this article wished to remain anonymous.
Pharmacy in Practice is a UK pharmacy publication with its roots in Scotland.