The solicitor representing the couple that had a pregnancy terminated at the National Maternity Hospital (NMH) after tests showed their baby had a fatal fetal abnormality said they must be “at the heart” of any investigation into the tragedy.
Caoimhe Haughey told RTÉ News yesterday that the couple was “utterly, utterly mentally and physically devastated” that test results which came back after the termination in March found that the baby did not have Trisomy 18, a chromosomal condition which is usually fatal.
“Their loss and their grief is interminable,” Ms Haughey said.
She said the couple would welcome an independent expert review of their case, with “some degree of caution” until they knew what the terms of reference would be and who would conduct the review.
“We are adamant that a genetic expert must be on board,” Ms Haughey said.
She said the couple wants “answers, the truth, and transparency”.
When the case came to light this week, it emerged the couple had made a complaint to the NMH in Holles St after they terminated the pregnancy at over 15 weeks on foot of a test which showed their baby had Trisomy 18.
According to reports, three tests were carried out, the third of which was sent abroad. The result of the third test came through after the couple had decided to go ahead with the termination. This higher-level test found the baby did not have Trisomy 18.
It is understood that informal discussions have taken place with the Royal College of Obstetricians and Gynaecologists (ROCG) in Britain with a view to it conducting a review.
A spokesperson for RCOG said: “We can confirm the RCOG has not yet received a formal approach to undertake this review. Should an approach be forthcoming, this will be considered in the usual way.”
A spokesperson for Health Minister Simon Harris said he believed an appropriate external review was warranted “and it is important to await its findings”.
The spokesperson said the minister’s “overriding concern is for the couple involved and respecting their privacy”.
The NMH has said it cannot comment on individual cases.
Fergal Malone, Master of the Rotunda, told RTÉ radio that interpreting screening and diagnostic tests can be quite complex and he did not feel the case should undermine the public’s confidence in such tests.
Prof Malone said the tests were “very robust” and “well tested over decades”.
Eilís Mulroy of the Pro Life Campaign said there had been a “deep seated reluctance” in Government circles “to listen to the experiences of parents who had received a misdiagnosis for their unborn baby, where in many instances the baby turned out to be perfectly healthy”.
“The Minister for Health is duty-bound to do whatever it takes to minimise the chances of something like this ever happening again,” said Ms Mulroy.
“He should start by listening to the stories of parents who have no agenda other than to share their personal stories.”
Tánaiste Simon Coveney said it was important that the family concerned “are getting the supports that they need and that there’s a full and independent investigation in terms of what happened, so that we can clearly understand what happened, and if there are policy consequences to that”.
CVS (chorionic villus sampling) is where cells are taken from the placenta via needle and sent to a lab for genetic testing. This is most commonly done at 10/11 weeks if there are blood test or scan abnormalities.
Results are back in 48 hours and are “generally considered very accurate and frankly diagnostic”, said Prof Fergal Malone, Master of the Rotunda.
Amniocentesis can’t be done until 15 weeks, where cells are taken from the baby. It takes two weeks to get results and is considered 100% accurate.
The rapid test can give a false positive, as low as one in a 1,000, but still possible.