Abortion / Disability

Down Syndrome activist says Rotunda doctor should 'go back to school'

A leading advocate for people with disabilities has sharply criticised a senior doctor in the Rotunda Hospital for using what he described as “offensive, outdated, and unsympathetic” language to describe babies diagnosed with Down syndrome – and says he fears parents are only hearing negative information at the time of diagnosis which might be pushing them towards abortion.

Michael O’Dowd, whose son Conor has Down syndrome, said the use of the “outdated” phrase “mental retardation” was “unacceptable” from a “senior doctor on the national airwaves” and that “those words have fallen out of use precisely because they were seen as negative, unhelpful and leading to discrimination”.

And he urged the HSE to undergo a full audit of how diagnoses of disabilities are shared with families in maternity hospitals – and to gather the experiences of families who had been through the healthcare system in Ireland in recent years.

Mr O’Dowd said that Dr Fergal Malone, an obstetrician who had said that 95% of babies who were diagnosed with Down Syndrome in his hospital were subsequently aborted, was speaking about the condition in a “cold and misleading way” – and asserted that if Dr Malone wanted to be in the room with parents receiving a diagnosis of the condition, then he needed to “go back to school”.

He also said Dr Malone discussed negative health implications of Down syndrome on national radio without also revealing what was now known about improved outcomes for such patients.

Both Dr Malone, who was formerly the Master of the Rotunda Hospital, and Mr O’Dowd discussed the issue of abortion after a diagnosis of Down Syndrome on Newstalk’s Hard Shoulder last week, though they each appeared in separate segments of the show.

Newstalk Interview

Opening the discussion, presenter Kieran Cuddihy asked if people with Down syndrome are “disappearing from our society” after referencing statistics from Ireland and other countries. He was then joined by former Mayor of Drogheda, Michael O’Dowd, who is father to Conor (27) who has Down syndrome, and is an Aontu representative in Louth.

Mr O’Dowd said that the figures from the Rotunda which suggested that up to 95% of babies diagnosed with Down Syndrome were then being aborted abroad were really “quite frightening” and demonstrated “the fact that there is a catastrophic failure in the counselling service in the Rotunda for parents to get that particular diagnosis.”

“So we as a society, we need to decide whether we want to have children with Down syndrome, and the richness and the beauty that they bring to all our lives, or whether we want to have a society without them. So I mean .. the gene that causes the chromosomal disorder will continue to happen. So this is a discussion that will continue: we will never be in a situation where we have no Down syndrome people in the world, but certainly some societies are moving that way, unfortunately,” he said.

The Drogheda dad was asked by Mr Cuddihy if he agreed that the figures provided and the experience in other countries like Iceland and Denmark would suggest that the reaction from people is “an overwhelming sense of burden when they get the diagnosis”.

Mr O’Dowd said that while it can be a “devastating prognosis to get” he would advise parents firstly not to do anything immediately.

He also warned parents not to listen to obstetricians who might have a “fairly jaundiced view of people with disabilities” – and urged them instead to talk to “other parents that have gone through similar situations”.

“And there’s lots of really popular and good social media sites out there that I would advise,” he said. “You know, there are challenges to have a child with a disability with Down syndrome – there can be additional health problems that need to be addressed, that need to be looked at. But overwhelmingly, the experience of having a child or have a person with Down syndrome in the family and the community is positive,” he said.

Mr O’Dowd said that “all the information” should be offered to parents – both challenging and positive information such as positive developments which have seen major companies offering employment opportunities to people with Down Syndrome.

Speaking later on the programme, obstetrician Dr Fergal Malone said that screening tests were becoming “increasingly sought-after” with 3,000 of the blood tests carried out a year in the Rotunda The tests, carried out at 9 or 10 weeks, search for the baby’s DNA in the mother’s blood stream and could reveal a “high probability” for certain conditions, including Down Syndrome.

Dr Malone said the fee for the test was €450 to €500 for the “pregnant patient” – and he said a “significant majority” of patients who got a confirmed diagnosis of Down Syndrome went to the UK – to Liverpool or London usually – for an abortion.

He said that patients were dealt with in a “non-directive” approach to counselling – giving “patients the facts” as to “what having a child with Down syndrome means”.

“What a typical child with Down syndrome ….. what positives and negatives there are about that,” Dr Malone said.

“For example” he said, “there’s a significant proportion of children with Down Syndrome have a heart defect, a significant portion have a bowel problem that needs a surgery.”

“And there’s a significant amount of mental retardation,” the obstetrician added.

“So all of those medical facts are given to patients,” he said.

"Mental Retardation - Outdated language"

Speaking to Gript, Mr O’Dowd said that he “strongly objected to the phrase mental retardation being used in relation to babies with Down syndrome” – and that Dr Malone, despite his claim of non-directive counselling, had “failed to say one positive thing about babies with Down syndrome in the interview.”

“That phrase brings up images of institutionalised babies and is a throwback to days when babies were hidden away, the world and medicine has moved on,” he said.

“The term is outdated and offensive and can lead to discrimination. Little wonder then if this is the language with which a Down syndrome diagnosis is being presented in the Rotunda that such a large number of parents opt for a termination,” the disability advocate said.

He pointed to the shift away from such language more than fifteen years ago. In 2007, the American Association on Mental Retardation was renamed the American Association on Intellectual and Developmental Disabilities, and also changed the name of its affiliated journal.

In a paper explaining that change, it was observed that intellectual disability is the preferred term to mental retardation because it “reflects the changed construct of disability”, and “aligns better with current professional practices that are focused on functional behaviors and contextual factors – and also “is less offensive to persons with disabilities”.

It has been shown – more a decade ago – that parents and the majority of healthcare professionals were reluctant to have the term “mental retardation used”; that “many now believe that mental retardation has itself become pejorative,” and that “the term mental retardation is scientifically worthless and socially harmful”.

As has been noted by commentators, an abbreviation of the term is sometimes used as a slur against people with disabilities.

SpecialOlympics.org say that while “mental retardation” was “originally introduced as a medical term in 1961 for people with intellectual disabilities, in the decades since, the R-word has become an insult used all too commonly in everyday language”.

Mr O’Dowd noted that both the International Classification of Diseases and the Diagnostic and Statistical manual of Mental Disorders no longer used the term “mental retardation”.

“But its been out of favour for a long time,” he said. “Hearing it being used on radio in Ireland in this day and age about children who share the same condition as my son is unacceptable. It says more about attitudes in the maternity hospitals than anything else.”

Communicating with Parents

Mr O’Dowd said that the gold standard in relation to communicating a diagnosis of Down syndrome or any other condition to parents needed to be adhered to and was well summarised in a recent paper which urged that doctors who are “up-to-date on the syndrome” discuss the diagnoses with parents.

“It is preferable for gynaecologists and geneticists to be accompanied by paediatricians and/or neonatologists,” the paper says, and Mr O’Dowd said that improvements in care and and in outcomes for children with Down syndrome might not receive the full attention of an obstetrician as opposed to a specialist providing that care.

The paper also urges clinicians to “have a positive attitude and extensive knowledge of the condition” and to communicate “the diagnosis without implying personal judgements”, while “absolutely” avoiding “expressions that may be offensive and/or obsolete.”-

He urged the HSE to undergo an audit of how diagnosis of disabilities are shared with families in maternity hospitals – and to gather the experiences of families who had been through the healthcare system in Ireland in recent years.

“A study published last year in the Journal of Intellectual Disability which looked at the information given to Irish parents of newborns with Down syndrome showed that one mother said that she received “a black and white sheet of all the medical problems that she could have. I remember thinking, are you for real? This is my baby. I just grew her. She is a living person. That was cold and very overwhelming,” Mr O’Dowd said.

“Another 2020 study in the United States that said, “Mothers reported negative experiences with medical staff, including a lack of compassion, pressure to terminate their pregnancy, and pessimistic expectations about outcomes for their child and family. Many received limited or no additional resources or support systems.”

“Is that what’s happening in Ireland too? What’s the experience of families here? Why are 95%, according to Dr Malone, aborting after a diagnosis of Down syndrome at a time when so many outcomes, from schooling to employment and creative engagement, are now so positive for people like my son. I’m urging Stephen Donnelly to take this seriously,” he said.

Negative emphasis can be misleading

Mr O’Dowd also took issue with what he saw as the “wholly negative” presentation of information around other medical conditions which can arise with Down syndrome.

“Dr Malone’s medical facts also seem to be presented in a cold fashion and I would question whether they are informed by the most up-to-date research,” he said.

He pointed to improved outcomes for children with the condition born with heart defects, quoting Dr Penn Laird, a pediatric cardiologist, who has pointed out that nowadays “the outcome for a child with Down syndrome and a congenital heart defect is really excellent.”

“The vast majority of kids [with Down syndrome] now can get their heart fixed in a very satisfactory way so they can live a totally healthy life,” the heart specialist said.

The Global Down syndrome Foundation says: “research has since established that babies with Down syndrome fare very well after pediatric heart surgery” and says that “if surgery is performed early, most children with Down syndrome and a heart defect will do very well,” according to Dr. Dunbar Ivy, M.D., Professor of Pediatrics–Cardiology at the University of Colorado School of Medicine.

“My question for the Rotunda is: are parents given this positive news in addition to the caution that their baby might have a heart defect,” asked Mr O’Dowd. “These are questions I would like the hospital – and Dr Malone – to answer.”

“Are parents in Irish hospitals being pushed towards abortion because they hear negative, outdated statements about their babies and none of the positivity they deserve to hear,” he asked?

“Similarly, I’d like to know on what basis Dr Malone claimed a “significant” portion of babies with Down syndrome need bowel surgery,” said Mr O’Dowd. “The medical literature shows just between 6% to10% of such babies have gastrointestinal anomalies – and that the outcome of such surgery is generally good. So why the focus on negativity? Why wasn’t that good news shared? Is it shared with parents in the Rotunda?”

He pointed to a recent study, published in Pediatric Surgery International, which showed no difference in outcomes after surgery for duodenal atresia, the most common gastrointestinal anomaly in babies with Down syndrome, for children who had the condition in contrast to those who did not.

“Expectant mothers deserve better information about possibilities for the child with Down syndrome, about education and intervention,” he said. “I would argue that it is misleading to present just a part of the information as was done in this interview, and I very much hope that is not what’s happening when a diagnosis is given.”

“The best practice is to have in the room at the time of imparting the diagnosis a competent up to date professional that has experience of dealing with the developmental challenges of a child with Down syndrome. If Professor Malone wants to be in the room at that time he needs to go back to school,” Mr O’Dowd said.

Conor wrote to Dr. Malone

The Drogheda dad also told Newstalk that when Dr Malone was reported last year as saying that 95% of babies diagnosed at the hospital with Down syndrome were aborted, his son Conor wrote a letter to the former Master of the Rotunda.

“Unfortunately he didn’t respond,” Mr O’Dowd said.

He pointed to positive stories on social media showing people with Down syndrome getting good results in the Leaving Cert applied – and praised businesses like Specsavers, Boston Barbers, and local hotels who were, amongst others, providing opportunities for people with the condition.

“There needs to be a change in attitude among medical professionals to the issue of disability and the contribution of people with disabilities to society,” he said.

In January, Conor O’Dowd, delivered a letter to the Rotunda maternity hospital and gave a heartfelt speech at the hospital, directly addressing Dr Malone.