The advice was that it would be best to proceed with a termination.

Two weeks after the procedure, a final result came through from the tests that had shown up the abnormality. Instead of confirming the result, which they had been told was definitive, this showed that a catastrophic error had been made. Their unborn baby, a boy, was healthy.

Life-altering event

In the two years since the life-altering event, the couple hasn’t got closure. The pregnancy had been much longed for, the loss leaving a sense of bereavement and shock.

Their trauma has, they believe, been compounded by how the whole matter was dealt with by the maternity hospital in question and a State that appears unable to take control of the situation.

“We are different people than we were before this,” Pat says.

“Part of that is down to the tragedy, but the other thing is closure. 

There is still the ongoing risk as far as we are concerned. The risk to other couples has not been addressed

On December 20, 2018, President Michael D Higgins signed into law the Health (Regulation of Termination of Pregnancy) Act 2018.

The legislation was in response to the passing of the referendum the previous May to repeal the eighth amendment, which had banned abortion. The referendum was passed by a two-to-one majority.

Fatal foetal abnormalities

One of the key areas of the referendum campaign was that of fatal foetal abnormalities.

A series of personal stories before and during the campaign had highlighted the emotional trauma of parents who had to go to the UK or Europe for a termination when told their expected child would not survive for long outside the womb.

Section 11 of the new act stated: “A termination of pregnancy may be carried out in accordance with this section where 2 medical practitioners, having examined the pregnant woman, are of the reasonable opinion, formed in good faith, that there is present a condition affecting the foetus that is likely to lead to the death of the foetus either before, or within 28 days, of birth.”

Four days after the president signed the act into law, Rebecca Price and Pat Kiely received the news for which they had been longing. Rebecca was pregnant. It was to be a Christmas like no other, full of the expectation of what the coming year would bring.

Pat is from Oysterhaven in Co. Cork. He is a consultant orthopaedic surgeon, who is well known for his work with children who have scoliosis, the painful spinal condition. Rebecca is from Wales and works in the medical devices sector.

The couple met in Dublin and live on the northside of the city.

The new health act came into force on January 1, 2019. Over the following days, Rebecca got in touch with her local maternity hospital, the Rotunda, but was told that she would have to wait until March 20 for her first pregnancy scan.

“I would have been 17 or so weeks then, which is late for a first scan,” Rebecca says. “So we went private to the Merrion Fetal Health Clinic for a scan.”

The clinic is owned by five consultants attached to the National Maternity Hospital (NMH) in Holles St.

On February 21, Rebecca and Pat attended the scan. The news was good, all was perfect. As Rebecca was getting dressed, the nurse asked would she be interested in doing the test to check whether there was any sign of Down Syndrome or two other possible serious conditions.

Harmony test

This is the non-invasive prenatal test, known as the Harmony test. It is designed to detect the risk of trisomy 21 (Down Syndrome), trisomy 18 (Edwards Syndrome) or trisomy 13. The test is taken by many pregnant women, particularly those of an older age.

According to Rebecca, the nurse said that if she took the Harmony test that day, she would get it at a reduced rate.

“We went across the road and had a coffee and thought about it,” Rebecca says.

I was 35, an older mother, and there would be no harm in getting any information we could. If there was something then we could be in a position to prepare for it

“So we rang back and said, yes, we’d do it.”

That afternoon she took the test. Had the test not been offered, or had the couple opted not to take it, their lives would have taken a very different course.

Seven days later, Rebecca got a call from consultant obstetrician Fionnuala McAuliffe at the NMH. The bad news was the test had detected trisomy 18, Edwards Syndrome. The prognosis was that if the child survived birth, he wouldn’t live for long.

However, the test, while marketed at providing 99% accuracy, is only designed to identify a “high risk” of the presence of the trisomys. A follow-up invasive test is required for confirmation.

The devastated couple were asked to come in the following Monday for a chorionic villus sampling (CVS) test, which would provide a definitive diagnosis.

The CVS is one of two tests designed for this purpose. The other is amniocentesis, which is considered to be more accurate.

Amniocentesis directly reflects the foetal DNA structure, CVS is for the placenta and is generally used in the earlier stages of pregnancy, under 15 weeks. The foetal and placenta DNAs are usually similar, but not necessarily so.

When the couple arrived at the NMH on the Monday, Rebecca first underwent another ultrasound scan. Again, this showed everything normal.

“I asked didn’t that raise a question about the Harmony test but I was told no, because the Harmony was a DNA test and it had to be the more accurate one,” Rebecca says.

She then had the CVS test. She was around 15 weeks pregnant at the time.

Four days later, on Friday, March 8, the couple got a phone call from a nurse in the hospital. The initial CVS result confirmed that there was a fatal foetal abnormality in the form of trisomy 18. They were asked to come in the following Monday for a consultation on how to proceed.

“When we went in, we talked it through with Prof. McAuliffe,” Rebecca says.

“I had been in touch with Soft, the charity for parents of children with Edwards syndrome and I had got a fair bit of information on it.

We wanted to see if there was any way that there could be a chance that he might survive and live for a while at least

“But in the end we were told that the results were definitive, that this was full-blown trisomy 18 and the final result would only show if there was something else wrong as well.

"I asked were we being told there was no hope and she said yes."

Termination

Arrangements were made for the termination. Rebecca was not examined by a second physician, as required by Section 11 of the act under which the procedure was to take place.

Later, the hospital would say that another doctor examined Rebecca’s file and notes to fulfill the requirements of the law, but the legislation explicitly refers to the second physician “having examined the pregnant woman”.

The termination took place on March 14. The couple named the baby Christopher. Rebecca retained the umbilical chord for sentimental reasons. They had Christopher cremated and brought the ashes to west Kerry, where the couple have a holiday home. The ashes were scattered in the shadow of Mount Brandon.

On March 26, the obstetrician in the NMH received a phone call from the laboratory in University Hospital Glasgow where the CVS test was being processed.

Final result

The final result was completely unexpected. There was no sign of trisomy 18. The termination of Rebecca’s pregnancy had been based on erroneous and incomplete results.

Some days later, the couple were asked to come into the hospital one more time.

On April 4, they met Prof McAuliffe again and a midwife. They were told that the final results were not as expected, but had shown there were some normal cells.

“We were told that, theoretically, there was a tiny chance that these cells may represent he was a normal child,” Pat remembers.

I asked had this kind of thing been seen before and was told it had

"We were left confused. I felt dumb because I couldn’t figure it out. We were both at a loss and then the meeting segued into whether we should be tested for trisomy 18.”

Rebecca was given an envelope with her file in it and the full results of the tests. They were both asked to give blood samples to check whether either was a carrier of trisomy 18.

Unsatisfactory

The meeting was unsatisfactory from their point of view, as if everybody had been talking around something.

Afterwards, Pat had to rush off to a surgery in Crumlin Children’s Hospital. Rebecca walked towards the city centre and stopped in a coffee shop. She opened the envelope which held her file.

The first line of the final report from the lab in Scotland read: “Chromosome analysis of cells cultured from chonionic villus biopsy indicates an apparently normal male chromosome complement with no evidence of mosaicism involving chromosome 18, in any of the thirty cells examined.”

She didn’t have to go any further. She knew the enormity of what the report stated. Their unborn baby had been perfectly healthy. There was no reason to believe that he had, as the couple had been assured, a fatal abnormality.

In Crumlin, Pat was unsettled as a result of the meeting that morning. He got through his work and, when he had a minute to spare, he phoned Rebecca to see how she was.

“She was very distressed and said get home as soon as you can. I legged it home and I found her upstairs in the dark and she was crying and she handed me the report and it confirmed that Christopher was probably not fatally affected by anything.”

Medical negligence

A recurring theme of medical negligence cases down through recent decades has been the conduct and legal approach of the State or hospital towards the victim in the aftermath of an incident.

In the three weeks between the termination on March 14, 2019, and the final consultation with the obstetrician on April 4, a bereavement nurse had been in contact with Rebecca. (The couple are highly complementary of the nursing staff they encountered in the NMH).

After April 4, there was no further contact. Neither was there any follow-on call from any of the senior staff at the hospital. On April 12, Pat rang the master of NMH, Shane Higgins, and expressed the devastation he and Rebecca were experiencing.

“I met him in his office and gave him our experience word for word and how we had to make the discovery ourselves of what happened,” Pat says. 

I told him my belief that this must have happened to other people and we wanted it investigated and a way to ensure that it would never happen again

An incident form is required to be submitted within 72 hours when something of this magnitude occurs. The form wasn’t completed until April 18. It records the date of the incident as March 27, the date that the final result was received, rather than March 14, the date of the termination.

Sympathy

There was further communication with the hospital. The obstetrician replied, expressing sympathy and offering to meet again. Despite that, the couple felt they were getting the runaround and asked solicitor Caoimhe Haughey to communicate on their behalf.

ON May 13, Ms Haughey wrote to the hospital pointing out a number of issues that had arisen in her clients’ case, including the failure to certify the termination.

According to Section 20 of the 2018 Act, all terminations carried out must be notified to the health minister within 28 days of the procedure.

On the same day that Ms Haughey’s letter was delivered, the hospital notified the minister of the termination that had taken place 60 days previously.

With the assistance of a geneticist, the couple organised for DNA to be extracted from the umbilical chord to be sent to Centogene, a laboratory based in Germany that specialises in genetic analysis.

The resultant report stated: “We did not detect any clinically relevant copy number variation (CNV). We detected a normal male chromosomal constitution.”

This was further confirmation that trisomy 18 had not been present.

Medical file

Rebecca sought her medical file from the NMH through a data request. When she received the file, the pathology report was missing. She wrote and got more documents and still the file wasn’t complete.

She wrote again and again. In total, the couple had to make seven separate requests for the file because it kept coming back incomplete.

The experience prompted them to lodge a complaint with the Data Protection Commissioner, which, the Irish Examiner understands, engaged with the hospital on their behalf.

The hospital didn’t communicate with Rebecca’s GP, as might be expected under the circumstances. The impression the couple got was that the hospital just wanted them to go away and let bygones be bygones.

Investigation

Later in May, the hospital announced that the London-based Royal College of Obstetricians was going to conduct an investigation. This did not proceed, ostensibly because the college said it didn’t have the expertise required. A major issue throughout was that neither the HSE nor the minister could order an independent inquiry as the NMH is a voluntary, or non-profit privately owned, hospital.

The State funds and indemnifies the hospital but does not have the power to order an inquiry. As such, the hospital would be funding the inquiry, calling into question its independence.

Over the last two years, the couple have had meetings with two ministers for health, HSE chief medical officer Tony Holohan and numerous officials. They have written to the Attorney General and Dublin City coroner about what they believe to be a breach of the law.

Legal action

In 2020, having failed to get any kind of a response they considered appropriate, they launched a legal action against the hospital and the private health clinic where Rebecca had the initial scan.

Last December, there was an attempt at mediation between the parties. A report on the matter compiled by Peter McKenna, HSE clinical director for the national women and infants programme.

“The aim was that the family could obtain an acknowledgment of the significance of the event that occurred, an apology for that event, and an explanation as to how the hospital had ensured a similar event could not happen again,” the report states.

The process broke down, despite a series of meetings over three months into March this year. Mr McKenna points out that, in recent years, there have been two cases at the NMH in which the department felt that an independent inquiry would be appropriate.

“The first case was a maternal death and this current case involving a termination is the second. In both cases, the personnel suggested by the Institution [the NMH], to do the review, were appropriate and their integrity beyond reproach.

“What can be said is that the independence of the review could be called into question if it was organised by the Institution in which the adverse event took place. That the funder of the service (Department/Minister) cannot mandate an independent review seems inappropriate, indefensible and ultimately unsustainable.”

Grief

It has now been over two years since the couple experienced trauma and tragedy on a scale few will ever encounter. In that time, the nature of the fallout has ensured that they are still having difficulty getting through the first stage of grief.

“The risk to other couples has not been addressed,” Pat says. “They brought this legislation in very quickly and chose 1 January [2019] to start it for political reasons. Then six weeks later, all of this happened. Within another six weeks, we had flagged it and we haven’t even had a response from the current minister about our concerns.”

Their ordeal has been life-changing, but they are both individually equipped to research and process all that is involved in their case. They are acutely aware that others may not be so fortunate.

What about the couples who don’t have access to the kind of people I was able to call up

“What about those who are not in a position to take on board all the different aspects in terms of the science or medicine? We were fortunate in that regard, but has it happened to others who haven’t been able to deal with the enormity of it or pursue it to the extent that we have?

“Nobody should be put through this,” Pat says.

Rebecca says she is acutely aware of the wider issues around abortion that arose in their ordeal.

“It was never our intention to polarise people,” she says. “The issue here is pro-choice should be exactly that, informed choice made on correct information. If the legislation and the guidelines were followed, we would not be in this situation.

“If Christopher’s life and legacy is that other failures and future children can be better protected, that would be something real.”

‘Beginning of the end of a harrowing, cruel, and tortuous journey’

On Tuesday, the couple’s court action was due to open, but following negotiations the National Maternity Hospital and the Merrion Fetal Health Clinic admitted liability.

The following day, a settlement was reached. Afterwards, Pat and Rebecca held each other outside the Four Courts as their solicitor Caoimhe Haughey read the following statement.

“I am here today on behalf of Rebecca, Pat, and their son, Christopher, who are at the beginning of the end of a harrowing, cruel, and tortuous journey.

“Rebecca and Pat made it absolutely clear in early March 2019 to Professor Fionnuala McAuliffe that they would only have considered her advice to end their pregnancy if their baby had no chance of survival.

“The guidelines co-authored by the named defendants in this tragedy to accompany the implementation of the Health (Regulation of Termination of Pregnancy) Act, 2018 were not followed and Christopher was wrongly diagnosed with a condition known as Edwards Syndrome, Trisomy 18.

Christopher was a normal healthy baby boy. It has taken two years, three months, and nine days to get to this point.

“Christopher’s voice has been finally heard and vindicated arising from the full admission of liability on the part of Merrion Fetal Health and the National Maternity Hospital, Professor Fionnuala McAuliffe, Dr Peter McParland, and Professor Shane Higgins, yesterday at the 11th hour.

“It is now accepted and acknowledged that Christopher was taken away from Rebecca and Pat as a result of the incorrect interpretation of genetic tests by Prof McAuliffe and her colleague Dr Peter McParland compounded by subsequent, catastrophically incorrect medical advice.

“Nothing will ever take away the interminable sadness and grief which Rebecca and Pat live with every day; however, following further protracted negotiations overnight and today a resolution has been reached.

“Nothing will take away Rebecca and Pat’s love for their son, Christopher Joseph Kiely, who would be two years old this summer.

“Rebecca and Pat would like to meet with the minister for health as soon as possible to work with him on ways to ensure this ‘never event’ never happens again.

“For the sake of maternal and infant health care in our country, Rebecca and Pat are calling for the immediate cessation of the current practice of not awaiting the results of chorionic villus karyotyping analysis in all cases where genetic conditions are suspected in the presence of a normal scan.

“Rebecca and Pat wish to heartedly thank everyone who has supported and cared for them, especially their families and their solicitor, Caoimhe Haughey, Richard Kean, senior counsel, Liam Reidy, senior counsel, and Ms Esther Earley BL.

“Rebecca and Pat also wish to particularly acknowledge and thank Dr Wille Reardon, consultant geneticist at the National Maternity Hospital, and Dr Bryan Beattie, consultant in fetal medicine from Wales.”