A woman who did not meet the criteria for a termination in one state hospital but was accepted for the procedure in another has called for greater consistency in Ireland’s abortion services.
he woman was 20 weeks pregnant when her baby was diagnosed with a possible fatal foetal abnormality at Cork University Maternity Hospital. However, her case did not pass the threshold for a termination without further tests.
The woman said she spent the next week “out of her mind” trying to organise a termination in the UK, in the middle of a pandemic.
Six days later, the night before she was due to travel, she received a last-minute appointment at Limerick University Maternity Hospital where a fatal foetal abnormality was diagnosed and her baby was compassionately induced.
As debate rages over religious ethos permeating abortion services at the planned National Maternity Hospital, the woman’s case reflects the concerns of advocacy groups over what they say is an “uneven” provision of services across the country.
“The key question is why I had to go through a week of trauma trying to get myself to the UK when my baby was suffering from what is deemed a fatal foetal abnormality,” said the woman, who asked to be identified only as Triona.
A government-appointed barrister is currently chairing a review of the operation of abortion legislation passed into law three years ago. Services have already been criticised by stakeholders as inconsistent, with half of the country’s 19 maternity centres offering the service.
In cases of fatal foetal abnormality, two doctors must be of the “reasonable opinion formed in good faith” that the foetus has a condition that is likely to lead to its death, before or within 28 days of birth.
Some doctors find the 28-day rule “ambiguous” and “restrictive”, while the criminal consequences generated fear of making an “incorrect diagnosis” of a fatal foetal abnormality, according to an academic paper published last year.
A submission to the government review by advocacy group, Terminations for Medical Reasons, said the “chilling effect” of criminalisation was such that women with a particular fatal foetal abnormality diagnosis may be provided with termination in one hospital, while the same diagnosis is not sufficient in another — creating “unevenness” in the provision of service.
Triona, now 38, was thrilled to discover she was pregnant in November 2020, having lost a baby a short time earlier.
“I felt such joy that we would be extending our little family of three to four, having suffered a miscarriage at the beginning of the first lockdown in March 2020,” she said.
Nothing prepared her for the diagnosis suggested by her routine 20-week scan at her local hospital in January last year.
The scan suggested anomalies. She received the devastating news alone, her partner prevented from being with her because of Covid-19.
In line with guidelines, she was referred to a foetal medicine specialist at Cork University Maternity Hospital the next day. There, her scan confirmed anomalies that were indicative of Thanatophoric Dysplasia, a rare form of dwarfism that listed as a fatal foetal abnormality.
It is often not an easy death, sometimes by suffocation at birth.
The diagnosis for Triona’s baby was not conclusive.
The notes on her scan referred to ‘telephone receiver’ femurs associated with the condition, but also noted “not diagnostic of a specific skeletal dysplasia”.
The consultant performed an amniocentesis to test for Thanatophoric Dysplasia. Her notes said: “Second opinion in UK?”
Triona was told the test results could take several weeks. Before they left the hospital, a social worker assigned to their case gave Triona and her partner two business cards of organisations she was told could “assist” her to procure a termination in the UK.
In the underground hospital car park, they googled Thanatophoric Dysplasia. “The baby was kicking, and I felt as though a concrete block was placed on my chest with every kick,” said Triona.
She told her parents that night of her decision: “I told them that I could not go through with the pregnancy.
“I said I was sorry if they think badly of me, but I can’t allow my little girl to suffer. They said they supported my decision 100pc and had no doubt I was doing the best I could for my child.”
The next seven days were “unimaginable”, she said. She contacted clinics in the UK, but she was deemed too high risk because of issues she’d had in earlier pregnancies.
She was terrified that Covid-19 would prevent her from travelling. Her overwhelming concern was how she could repatriate her baby’s remains. She made more than dozen fruitless calls to airlines, until a local TD put her in touch with a charity that specialised in returning remains from overseas.
The man who called assured her: “I will get on a ferry whatever day you need me, and I will pick up your baby and take her wherever she needs to go, and I will look after her.”
Triona’s mental health suffered. “I could not cope with the anxiety,” she said. “I had lost my way and my mind. I started to think both my children would be better off if I were dead. It would make it all stop. I felt no matter where I turned there was another brick wall. I was not going through with this pregnancy. My baby would not suffer and die like that. One way or another I was not going to let that happen to her.”
In this state of high anxiety, she rang “every hospital in London” until she finally found one to take her. Her own obstetrician was so concerned about her, Triona said, that she referred her to a peri-natal psychiatrist to whom she poured out her heart.
The night before her flight to London, her obstetrician again phoned to tell her Limerick University Maternity Hospital would see her the next morning. She dropped in en route to Dublin Airport, fully expecting to have to continue her journey on to the UK.
Two doctors performed a scan that took “an hour and a half”. Triona didn’t make it to the airport. One of the consultants told her she could “take her time”. She was told the procedure “did not have to be today”, it could be next week, but that their offer to assist her would not change.
Two days later, Triona’s baby arrived stillborn, following a compassionate inducement and 20 hours of labour at Limerick UMH. She cherished the last moments she had with her, the prints that staff made of her little hands and feet, and the tiny white coffin they took her home in.
“I thought and still think of all the women who never got those moments,” she said. “Who never got that time. Had to leave their babies behind in a foreign country and wait. It was nearly me.”
CUMH said the hospital does not comment on individual cases, but a statement said: “Skeletal dysplasias are complex and difficult disorders. While some would fulfil the criteria for ‘fatal’ under Irish guidelines, many would not. Therefore it is really important that all necessary investigations are done in full.
“This can be a very stressful time for patients and their partners while results are awaited.
“Thanatophoric Dysplasia is a particularly severe form of skeletal dysplasia. There are suggestive ultrasound findings but best practice requires genetic confirmation. CUMH takes our obligations in this regard very seriously and ensures terminations are not carried out unless a diagnosis is definitively confirmed.”
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