Fatal foetal abnormality misdiagnosis leads to wrongful terminations in Ireland

It has been established that the State Claims Agency has received two cases involving an unborn child who was mistakenly identified with a fatal foetal condition, which resulted in the decision to terminate the pregnancy.

The case revolves around parents who claim they were provided incorrect prenatal information that indicated the condition of the unborn child would likely result in death either in the womb or within 28 days of delivery. Under Irish law, this is considered abortion. Peadar Toibin, the leader of Aontu, had asked a parliamentary question about the number of unfavourable incidents involving the Health (Regulation of Termination of Pregnancy) Act 2018 over the previous five years.

A written parliamentary response from Health Minister Jennifer Carroll MacNeill addressed these parliamentary enquiries posed by Aontu Leader Peadar Toibin. “The State Claims Agency has two ongoing claims for persons alleging that their unborn baby was wrongfully diagnosed with a condition sufficient to bring them within the scope of the Health Regulation of Termination of Pregnancy Act 2018”.

The minister said, “It is inappropriate to provide the years of claims, as to do so could have the effect of identifying individual cases”. After parents were told in 2019 that their unborn child would either not survive pregnancy or would pass away within a day of giving birth, a high court case was filed in 2021. It was suggested to these parents that it would be better to go ahead with a termination. Two weeks after the termination, a conclusion was made, which indicated that the baby was indeed healthy.

Mr Toibin expressed his opinions regarding the legislative responses to the two new cases. He worries about the possibility of additional devastating incidents “if there is no accountability” for what has happened. What do you think could be done to stop this from happening again?

He shares about how he was not shocked. The minister was encouraged by the Aontu “to examine all notifications of abortions she has received – as mandated under section 20 of the Act – to ensure that the law is being adhered to. It is extremely worrying to learn that there are multiple cases of abortion following misdiagnosis”.

Mr. Toibin questioned what safeguards are in place. Safeguards could help prevent this from happening again. The HSE declared, “During pregnancy, expectant mothers are offered some routine tests known as screening tests, such as blood tests and a foetal anatomy ultrasound scan.”

“Screening tests are done to determine if the mother or baby is at a low or high risk of having certain health problems. If the screening results are ‘high risk’, the mother will be referred for more detailed diagnostic tests. A ‘low risk’ result does not mean no risk.”

All pregnant women are given access to screening testing. Unless the person chooses to pay for non-invasive prenatal testing (NIPT), they are often free. NIPT is not typically provided. Only in the event that an individual is at a high risk of a specific medical condition would any additional tests be provided. A screening test involves non-invasive blood tests and ultrasound scans. Medical conditions such as spina bifida can be identified by ultrasound scans.

Diagnostic tests are often more accurate in identifying maternal or foetal health problems. They can increase the chance of miscarriage and are more costly and severe than screening tests.

A spokesperson shared that “A positive result is a result showing you or your baby are at risk of having a health problem.” Screening tests are not always accurate. Counterfeit positive and negative findings can occur.

“A false positive occurs when a test indicates a problem, but further testing shows there is none. False positives can cause unnecessary stress and lead to additional tests. A negative result is when the test shows that the mother and baby are not at risk of having a health problem. Sometimes screening tests do not identify an actual health problem, which is called a false negative.”

The National Women and Infants Health Program sent out a learning alert to doctors and maternity networks. This was in connection with sharing the findings of prenatal tests, especially NIPT. The alert made it apparent that the patient’s unique circumstance determines the favourable predictive ability of NIPT and that it must be communicated in detail to prevent misunderstandings.

“NIPT can sometimes indicate a high chance of a condition when the foetus does not actually have it”.

“These figures emphasise the importance of confirming screening results with diagnostic tests such as amniocentesis or chorionic villus sampling (CVS) before making any decisions on the onward care and management of a pregnancy”.