A couple whose healthy pregnancy was terminated after they were wrongly advised of a fatal foetal abnormality are seeking an urgent meeting with the Minister for Health after settling their High Court actions.
In a statement outside court on Wednesday, Rebecca Price and Patrick Kiely said they want to meet the Minister as soon as possible "to work with him on ways to ensure this 'never event' never happens again".
Earlier, they held each other in court as the settlement was announced before Mr Justice Paul Coffey.
Under the settlement, the defendants, including the National Maternity Hospital, will confirm in writing to the Minister for Health that the DNA extracted from the foetus " showed no evidence of chromosome 18 abnormality and specifically no evidence of mosaicism of Trisomy 18 - although that cannot be completely excluded in the absence of a second cell type. However, these data are consistent with, and most likely representative of, a chromosomally normal baby boy".
The judge congratulated the sides on reaching a settlement in a case which had at its heart “a human tragedy of very great proportions” and extended his sympathy to the couple.
The couple, with an address in Phibsborough, Dublin, brought separate cases arising from the termination of the life of their unborn son, whom they named Christopher Joseph Kiely.
The proceedings were against five consultants, Peter McParland, Fionnuala McAuliffe, Rhona Mahony, Shane Higgins and Stephen Carroll, operating under a business partnership called Merrion Fetal Health, Lower Mount Street, Grand Canal Dock, Dublin; the National Maternity Hospital and a laboratory, the Greater Glasgow Health Board.
Liability was conceded by all the defendants on Tuesday and the actions were adjourned to Wednesday for assessment of damages.
After further talks between the sides, Liam Reidy SC, with Richard Kean SC and Esther Earley BL, instructed by solicitor Caoimhe Haughey, for the couple, told Mr Justice Coffey at 4.20pm both sides had worked hard all day to see if the matter could be resolved and it had been resolved on agreed terms.
He asked the court to make orders on consent striking out the proceedings against all seven defendants with an order for the clinic and hospital defendants to pay the plaintiffs costs.
The defendants are also to provide the written confirmation to the Minister for Health concerning the DNA extracted from the foetus as outlined.
The NMH also confirms it operates a policy of a multi-disciplinary team approach to termination for fatal foetal abnormality, counsel said.
Mr Reidy said the plaintiffs would also like to mention one personal thing. This was an event of such distress the support they had received from many people had been salutary over the years. They wanted to particularly acknowledge and thank Dr Willie Reardon, a consultant geneticist at the NMH, for his assistance, unfortunately after the termination had taken place.
In their statement afterwards, the couple said the settlement meant they are at “the beginning of the end of a harrowing cruel and tortuous journey” .
They said they had made it “absolutely clear” in early March 2019 to Professor Fionnuala McAuliffe they would only have considered her advice to end their pregnancy if their baby had no chance of survival.
Their statement said the guidelines co-authored by the hospital and clinical defendants in this tragedy to accompany the implementation of the Health (Regulation of Termination of Pregnancy Act, 2018, were not followed and their babywhom they named Christopher Joseph Kiely, was wrongly diagnosed with a condition known as Edwards Syndrome, Trisomy 18.
“Christopher was a normal healthy baby boy,” the statement said.
“It has taken two years, three months and nine days to get to this point.
"Christopher's voice has finally been heard and vindicated arising from the full admission of liability on the part of Merrion Fetal Clinic and the NMH, Professor Fionnuala McAuliffe, Dr Peter McParland and Professor Shane Higgins on Tuesday at the eleventh hour", the statement added.
It said nothing will ever take away the “interminable sadness and grief” the coupe live with every day but, following protracted negotiations, a settlement had been reached.
"Nothing will take away Rebecca and Pat's love for their son, Christopher Jospeh Kiely, who would be two years old this summer."
It also said, “for the sake of maternal and infant health care in our country”, they are “appealing for the immediate cessation of the current practice of not awaiting the results of Chorionic Villus karotyping analysis in all cases where genetic conditions are suspected in the presence of a normal scan”.
They added they wanted to thank everyone who has supported and cared for them, especially their families and lawyers. They also thanked Dr Reardon and Dr Bryan Beattie, a consultant in Fetal Medicine from Wales.
In their actions, the couple said they were delighted to find themselves expecting their first child on Christmas Eve 2018 with an estimated delivery date for early September 2019.
Ms Price (38) said on February 21st 2019, she had a completely normal ultrasound scan at 12 weeks and was advised a week later that a non-invasive prenatal test, known as a Harmony test, had been positive for Trisomy 18.
Trisomy 18, also known as Edwards Syndrome, is a rare chromosomal condition affecting how long a baby may survive, with most babies dying before or shortly after birth.
Ms Price said she underwent a second ultrasound scan which was also completely normal and was then advised by the clinic to undergo Chorionic Villus Sampling (CVS). Her samples were sent to the Glasgow laboratory for testing and she was advised a rapid result from the testing revealed Trisomy 18 had been detected.
During a consultation on March 11th 2019, she said she was wrongly advised by her consultant, Professor McAuliffe, on matters including the non-viability of her pregnancy and that her baby had a fatal foetal abnormality and had followed advice to terminate her pregnancy which occurred three days later.
It was claimed the result of a full Karotype analysis was later furnished to the defendants which revealed the foetus had a normal male Karotype and did not have Trisomy 18. That result, it was claimed, was readily explained by the “well-recognised” phenomenon of confined placental mosaicism - meaning the abnormal cells were confined to the placenta.
It was further claimed Ms Price and Mr Kiely were wrongly assured the discordant result would not have changed advice to terminate the pregnancy had it been available pre termination.
On learning the result of the full Karotype, Ms Price said she suffered intense nervous shock, having realised she had terminated “a normal, healthy baby”. It was claimed there was a failure to refer Ms Price and her partner for appropriate genetic counselling to enable them to be advised accurately and comprehensively prior to making any decision to terminate the pregnancy.
Ms Price said she has been left with a devastating sense of loss which nothing and nobody can fill and experienced what she describes as an all consuming physical and mental trauma that has consumed her ever since. Mr Kiely said he will carry the painful loss of his son with him throughout his life.
