It took the HSE six years, eight months and 22 days to issue an unequivocal apology for the death of baby Christopher Kiely, son of Rebecca Price and Patrick Kiely.
The HSE announced an independent review into how Christopher, a perfectly healthy and much-loved baby, was aborted after being wrongly diagnosed with Trisomy 18.
This condition is often described as a fatal foetal abnormality, a dehumanising term. The National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death do not use it. They prefer the term life-limiting condition, not least because each so-called fatal foetal abnormality has rare instances of long-term survivors.
Section 11 of the Health (Regulation of Termination of Pregnancy) Act 2018 governs abortions where there is “a condition affecting the foetus that is likely to lead to the death of the foetus either before, or within 28 days of, birth”. It specifies that two doctors must examine the patient, one an obstetrician and the other “a medical practitioner of a relevant speciality”.
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In baby Christopher’s case, a geneticist was the obvious relevant medical speciality. The parents assert that only one doctor examined Rebecca, and a geneticist was not consulted before that doctor advised an abortion.
As a result, there was a catastrophic misinterpretation of the implications of a non-invasive prenatal test (NIPT) result suggesting high risk, and of the first part of another diagnostic test, called Chorionic Villus Sampling (CVS).
The parents allege that they clearly stated they would parent a baby with a disability, but they were wrongly told Christopher definitively had a condition described as “lethal, fatal” with no hope of survival.
The Interim Guidelines on Termination of Pregnancy (2018) under Section 11 state that both “continuing the pregnancy with planned perinatal palliative care for the baby” and abortion must be discussed. They assert that did not happen.
Baby Christopher died in March, 2019, only months after the abortion legislation commenced.
Credit must be given to Bernard Gloster, CEO of the HSE, and Jennifer Carroll MacNeill, Minister for Health, for apologising fully, however belatedly, and for finally ordering an independent review after empty promises by Simon Harris in 2019.
The National Maternity Hospital (NMH) and Merrion Fetal Health (now Merrion Ultrasound) should have immediately given a comprehensive apology in 2019, the kind that says: “We got it disastrously wrong. We are so sorry. Here is what we are doing to establish how many times it has happened and these are the comprehensive steps we are taking to prevent it from ever happening again.”
Instead, NMH settled the day the case was due to appear in court in 2021, admitting full liability. The complete facts of the case were never aired in court. NMH would doubtless say that it offered to conduct a complete review, but an independent external review should never be overseen by the organisation implicated in the original catastrophe.
A national review of Section 11 was commissioned by the HSE, chaired by Lesley Regan, honorary secretary of the prestigious International Federation of Gynaecology and Obstetrics (FIGO). Regan’s survey included only 37 patients, found by LMC (formerly Leanbh Mo Chroí), whose advocacy arm is Termination for Medical Reasons (TFMR) TFMR campaigns for the extension of Section 11 beyond conditions likely to lead to death before or shortly after birth, and the complete decriminalisation of abortion. The review provided no answers for Rebecca and Pat.
NMH is a centre of excellence for education and training. Rebecca’s obstetrician, Prof Fionnuala McAuliffe, was elected to the executive council of FIGO in 2023. If a completely avoidable, tragic death can happen in NMH under a highly qualified obstetrician, it seems inevitable that this disastrous error could happen to other families in NMH and other settings.
In 2024, the State Claims Agency had only two ongoing cases where a baby was wrongfully aborted, but other parents may not have had the tenacity or resources of Christopher’s intelligent, well-educated parents, even in crushing grief.
It is imperative that we conduct a comprehensive audit of all the 525 cases of abortion for life-limiting conditions since 2019.
Regulation of NIPT is also essential.
Rebecca Price had a completely normal ultrasound scan, but her midwife said NIPT was more accurate. She offered a discount for NIPT because Rebecca had already had a scan in Merrion Fetal Health, co-owned by her obstetrician, Fionnuala McAuliffe, and four other NMH consultant doctors.
Each NIPT costs about €500. UCC research found that 57 centres, including maternity hospitals, GPs and private clinics, are selling these tests, with many websites failing to give accurate information on the test’s limitations and the need for further diagnostic testing when a high risk is suggested.
There have been calls for the State to provide free NIPT. This will be a disaster unless it is accompanied by training, genetic specialists and significant investment in planned palliative care for babies.
I have been writing about baby Christopher’s heartbreaking death since 2019, advocating for a truly independent, and we hope, forensic review with input from genetics experts.
I wrote recently about babies born alive after abortion. No one in power seems to care. How many years will pass before these deaths are investigated, too?
