Mothers of children with cleft lip speak out about law change to introduce abortion for the condition in Northern Ireland

Mothers whose children were born with a cleft lip and palate have spoken out in horror that the proposed abortion regime in Northern Ireland will allow babies with the condition to be aborted through to 28-weeks.

Cleft lip and palate is a condition which causes a small or wide gap in the roof of the mouth, upper lip or both. It is usually easily fixed by minor surgery. 

Terri Thomas was angry and shocked when she heard that a proposed change in the law in Northern Ireland would mean that abortions for cleft lip and palate would be available up to 28 weeks in Northern Ireland.

She said: “to read that some people [in Northern Ireland] may now consider a termination simply because of a cleft lip or palate is so upsetting”.

Terri Thomas’ son, Joseph Daniel, was born with a cleft lip.

Terri Louise Thomas said when her son, Joseph Daniel, was diagnosed with the condition she had lots of questions but never considered an abortion.

Following the birth of Joseph, the mother of two said: “to me he was perfect, his lip didn’t bother me in the slightest, I just felt pure love.”

Terri shared that Joseph is now almost two-years-old and has since had surgery on his lip, which has healed quickly and his scar is barely noticeable.

She added that “he is such a happy, clever and inquisitive little boy! He makes me smile every day.”

Joseph Daniel after surgery on his cleft lip.

Another mother, with a similar experience to Terri, has said she was left feeling distraught and heart-broken when she heard that the change in the law would mean that unborn babies could be aborted just because they had a cleft lip and palate.

Lauren Bolt said her daughter, Lily Grace, was only diagnosed with the condition three weeks before she gave birth to her.

However, even though Lauren didn’t know what a cleft lip and palate was, she wasn’t upset or worried about the condition.

The day her daughter, Lily-Grace, was born she said: “I set eyes on the most precious little girl with a unique cleft lip that looked like a love heart.”

Lily-Grace, 2, has also had corrective surgery on her lip. Lauren said “Lily Grace is the happiest, most beautiful little girl ever! She has so much character and I completely forget she was ever born with a cleft lip.”

Lily Grace’s cleft lip is barely noticeable following surgery.

Terri and Lauren both said they received great medical support from medics. The two mothers would encourage pregnant mothers, particularly in Northern Ireland, with children diagnosed with cleft lip and palate to keep their unborn babies and seek that same support.

What will change in Northern Ireland?

In July, in the absence of a functioning Stormont government, Westminster politicians voted to impose abortion on demand, up to 28-weeks, on Northern Ireland if Stormont’s Executive is not restored by 21 October.

If the change in law goes ahead, section 58 and 59 of the Offences Against the Person Act will be repealed in Northern Ireland. Abortion will be available, on-demand, up to 28 weeks legalising sex-selective and disability-selective abortion including abortion for Down’s syndrome, cleft lip and palate and club foot.

The proposals which are due to be imposed on Northern Ireland were passed after just 17 minutes of debate in the House of Commons around the final amendment that forced the change on Northern Ireland.

The original amendments, brought forward by pro-abortion MP Stella Creasy and widely thought to be outside the scope of the Bill, were only introduced and made known less than an hour before they were debated.

332 MPs in Westminister voted to force abortion on the province, despite it remaining a devolved issue in Northern Ireland and the fact that every single MP representing Northern Ireland in Westminster voted against the amendment.

Lord Shinkwin, who himself has a disability, heavily criticised the move citing the impact that it will have on people with disabilities.

Speaking in the House of Lords he said: “I am good enough to sit in your Lordships’ House, but this Bill suggests that someone diagnosed before birth with a disability such as mine in Northern Ireland would only be considered good enough for the incinerator.”

“Because that is the brutal message of this Bill: if you are diagnosed with a disability before birth in Northern Ireland, you will not just be worth less than a non-disabled human being; you will be worthless—you would be better off dead. What a dreadful message for this House to send the people of Northern Ireland, without even having consulted them in advance.”

Cleft lip and palate & Down syndrome abortion under-reported

In England and Wales, the number of abortions performed on unborn babies with cleft lip and palate has accelerated in recent years.

Official figures show that the number of terminations for those with the condition has more than tripled, from 4 in 2012 to an all-time high of 15 in 2018.

Since 2011, 75 unborn babies have been aborted because they had a cleft lip and palate.

However, findings from a European register have revealed that abortions for cleft lip and palate can be over ten times more common than what is being reported.

Eurocat, which was set up to register congenital abnormalities across 23 countries, found that 157 unborn babies, with the condition, were aborted in England and Wales between 2006 and 2010. The Department of Health only recorded 14 such abortions.

Joan Morris, national co-ordinator for Eurocat and professor of medical statistics at Queen Mary, University of London, said the group also found the number of babies aborted in 2010 for Down’s Syndrome was double that recorded officially – 886 compared to 482.

She told The Sunday Times: “Babies are aborted for Down’s and they still don’t put that on the abortion form, so if they can’t do it for Down’s, why would they put cleft lip?”

The discovery suggests that the number of unborn babies being aborted because of a perceived disability is significantly higher than what is being reported.

The Department of Health confirmed in a 2014 report that some disability abortions had been wrongly recorded.

Mother wins huge NHS payout after ‘wrongful birth’ of baby born with Down’s syndrome

The NHS has awarded compensation to a mother who said she would have aborted her son if she had known he had Down’s syndrome.

Edyta Mordel sued the Royal Berkshire NHS Foundation Trust over a failure to detect the condition in her son, Aleksander Mordel, before his birth in January 2015.

Mordel told the High Court in London, that although she is now devoted to Aleksander, she would have terminated the pregnancy if prenatal screening had been conducted and revealed that Aleksander had the condition.

When she discovered her pregnancy, Mordel claims she told a midwife that she wished to undergo a test that would screen for Down’s syndrome.

Lawyers for the NHS say that she was offered the test, but declined it. Therefore, a scan was carried out without screening.

Mordel’s medical notes record that she was “very and angry upset” when Aleksander was diagnosed hours after his birth, prompting her to sue the NHS for ‘wrongful birth’.

Mr Justice Jay ruled against the Royal Berkshire Hospital NHS Trust. The compensation payment is expected to be six figures.

Ruling in her favour, he said: “The claimant probably would have proceeded to invasive testing had she been told that there was a high risk of Down’s syndrome.

“[She] was a relatively young mother and I think that at the end of the day the fear that she might be carrying a child with Down’s syndrome would, at least for her, have tipped the balance.”

The High Court judge added that prenatal screening for Down’s syndrome should be offered to all expectant mothers as “many would wish to exercise their right to proceed to medical termination in the event of a diagnosis”.

In 2017, it was revealed that the NHS Litigation Authority had paid out more than £114 million in compensation to parents who said they would have aborted their children if they knew they were disabled.

Actress Sally Phillips has previously spoken out against testing for Down’s syndrome in the womb.

Phillips, whose 14-year-old son Olly has the condition, says the current system of disability screening is “a form of eugenics”.

She said that she and her son Olly have “happy and fulfilled lives”, as is normal for most families in their situation, and while there are challenges to raising a child with Down’s syndrome, there are also “great, great rewards”.

In England & Wales, government statistics show that where Down’s syndrome has been discovered in prenatal screening over 90% choose to abort the child. In Iceland, almost 100% of unborn babies prenatally diagnosed with Down’s syndrome are aborted.

Spokesperson for Right to Life UK, Catherine Robinson said: 

“It is not wrongful that babies are born with Down syndrome or other disabilities. It is wrongful that taxpayer money is compensating a culture and a society which sees disabled children as an inconvenience. 

“It is wrongful that the rise of prenatal screening tests across Europe has led to a state-funded programme targeting unborn babies who are perceived to have a disability. Babies, that as evidenced by Sally Philips and many other mothers with disabled children, lead happy and fulfilling lives.”

(Image credit: Adobe Stock: File #195357123)

Govt offer new travel incentive for late-term disability abortions including cleft lip and Down’s syndrome in England

The UK Government has announced that it will be providing travel, accommodation and free abortions in England for any women seeking an abortion that is legal in England and Wales but is not legal under the proposed regime in Northern Ireland.

If the Northern Ireland Assembly (Stormont) does not reconvene by October 21st, a new abortion regime will be imposed on Northern Ireland from Westminster.

The law change will repeal Sections 58 and 59 of the Offences Against the Persons Act in Northern Ireland, meaning the only legal protection for unborn children remaining would be the Criminal Justice Act (Northern Ireland) 1945 which only applies from 28-weeks gestation. That would mean that abortion would be available, on-demand, up to 28 weeks.

The new change in law will allow for abortion in cases where the unborn baby is perceived to have a disability, including cleft lip or palate and Down’s syndrome, through to 28-weeks. In England and Wales, while the current law is far more restrictive in most cases than the proposed law in Northern Ireland, although it does allow for abortion for disabilities right through to birth.

The Government’s announcement means that all pregnant mothers seeking abortions for babies with disabilities such as Down’s syndrome and cleft lip will have travel, accommodation and abortion paid for if they seek an abortion between 28-weeks and birth in England.

The Government did not announce any new funding for supporting parents in Northern Ireland who have chosen to continue with their pregnancy after a diagnosis of a disability.

This goes beyond the current scheme offered by the Government, which provides funding for travel and accommodation for only those women who meet certain financial criteria.

In England and Wales, the latest available figures show that 90% of children diagnosed with Down’s syndrome before birth are aborted in England and Wales.

Northern Ireland’s current approach is very different. Disability-selective abortion for Down’s syndrome is not permitted and there is a culture of welcoming and supporting people with this disability rather than eliminating them.

This is reflected directly in the latest figures from the Department of Health in Northern Ireland, which show that while there were 52 children born with Down’s syndrome, in the same year, only 1 child from Northern Ireland with Down’s syndrome was aborted in England and Wales.

This change was condemned in two speeches by disabled peer Lord Shinkwin in the House of Lords when he was speaking against the proposed changes.

The travel incentive announcement comes after the Northern Ireland Office recently confirmed that it will launch a nationwide abortion marketing campaign across Northern Ireland if the abortion law changes on October 21st.

The Government has confirmed that the travel incentive scheme will remain in place after 31 March 2020 until they “are confident that service provision in Northern Ireland is available to meet women’s needs.” 

Spokesperson for Right to Life UK, Catherine Robinson said:

“After directly undermining devolution and imposing the most extreme abortion law in Europe on Northern Ireland, the UK Government has announced that they are going to make the situation even worse. This new travel incentive provides tax-payer funding for travel, accommodation and abortions for very late disability, selective abortions but no additional taxpayer funding to support parents who keep their babies diagnosed with a disability. This effectively amounts to a new state-sponsored incentive to abort babies with disabilities late in pregnancy.

“We call on Sinn Féin and the DUP to listen to the people of Northern Ireland and to re-establish Stormont so that democratic process can be restored and this extreme abortion regime will be halted.”

NZ PM Jacinda Ardern’s Bill to introduce abortion up to birth for children with Down’s syndrome – Parents speak out

Parents of children with Down’s syndrome, as well as leading Down’s syndrome advocacy groups, have spoken out against the New Zealand Government’s abortion Bill which will permit abortion up to birth for babies prenatally diagnosed with the condition. The Bill has been introduced following a pledge before the last election from the country’s Prime Minister Jacinda Ardern to make widespread changes to abortion law.

On the final day (19/09) for public submissions on the New Zealand Abortion Legislation Bill, a number of parents have publicly voiced their concerns about the harmful impact this Bill will have on people with Down’s syndrome.

The new abortion Bill

Currently, there is a 20-week time limit for disability-selective abortions in New Zealand law.

The proposed legislation will see this time limit removed and abortion for babies prenatally diagnosed with Down’s syndrome will be available up until birth, with the approval of a single doctor. 

In 2017, Saving Down Syndrome highlighted their concern that in her pledge to change the abortion laws, New Zealand Prime Minister Jacinda Ardern, would end up introducing abortion up to birth for babies with disabilities. In response, Jacinda Ardern made a commitment to not increase the time limit for disability-selective abortion.

Saving Down Syndrome, in their submission on the Abortion Legislation Bill, highlighted that Jacinda Ardern had broken that promise. Hundreds of people with Down’s syndrome and their families have signed an open letter calling on Jacinda Ardern to not break her promise.

In their submission, Saving Down Syndrome highlighted that the relevant clause in the proposed New Zealand legislation, only requires one registered health practitioner, which could include a single nurse. By contrast, in Victoria, Australia – which has a similar law – there is a higher threshold requiring two doctors two approve a late term abortion.

In the handful of jurisdictions that have a similar clause, in practice this has allowed for abortion for disabilities including Down’s syndrome right up to birth. In fact, there have been over 1,600 abortions of babies with a disability in Victoria, Australia, since the law was changed in 2008.

Pressure to abort

Many parents recounted the pressure they were put under by health workers to either undergo prenatal genetic testing for Down’s Syndrome (with the assumption that the mother would then choose an abortion) or to have an abortion if genetic tests suggested their child had an Down’s Syndrome.

Aggie Brown, whose adopted son Reuben has Down’s Syndrome, said his birth mother was put under constant pressure to have an abortion once her child was prenatally diagnosed with having Down’s Syndrome.

“Unfortunately her GP was strongly asking her to consider having an abortion and was actually giving the birth mum all the worst scenario if she decided to keep the baby,” she said.

“The birth mum actually dreaded to go to her health visits because it was always brought up by the GP and we actually applaud the birth mum for sticking to her guns.”

Rachel Price, a New Zealand mother who has a daughter, Eden, with Down’s Syndrome, recounted a very similar experience during a subsequent pregnancy. Even when Rachel said that she did not want genetic testing on multiple occasions, the clinic she attended made an appointment for her anyway, which she told them to cancel.

“We were under immense pressure to go and have genetic counselling,” she said.

“But why? If we have another child with Down’s Syndrome we are quite OK with that and we will carry on with the pregnancy.”

The representative for the New Zealand Down Syndrome Association, Diane Burnett also has a daughter, Jada, who has Down’s Syndrome, and she said the social and medical pressure was intense when she wanted to opt out of the prenatal screening process.

The women said the developments in prenatal screening aimed at detecting disabilities has led to an assumption that women will want an abortion if they find out their baby might have Down’s Syndrome.

They were concerned that New Zealand could edge closer to what has happened in countries such as Iceland, which has an almost 100% abortion rate for unborn babies prenatally diagnosed with Down’s Syndrome.

One parent, whose son has Down’s syndrome, went so far as to say routine abortion of babies diagnosed with Down’s Syndrome was a form of eugenics.

“I think New Zealand can do better than Iceland. I feel really saddened to hear that Iceland abort 99 percent of people that have Down’s Syndrome,” she said.

“To me that seems like a eugenics programme, and that’s just madness.”

What’s it actually like to have a child with Down’s Syndrome?

In addition to the pressures they felt in regard to abortion, all the parents were eager to let others know how happy their children with Down’s Syndrome were, and the one-sided nature of the discussion which rarely shows this.

Diane Burnett of the New Zealand Down Syndrome Association said women are just not given the full picture when they find out. “They are given very medical and clinical information,” she said.

“Figures on heart conditions and health conditions and hearing loss and eyesight problems, and people with Down’s Syndrome are not the only people who have those issues.”

“They’re not getting what it is actually like to have a child with Down’s Syndrome.”

Aggie Brown whose adopted son had Downs’ Syndrome said “Most people know that with Down’s Syndrome they carry the happy gene, they are always smiling,” she said.

“They do have their moments, they are strong-willed, but overall, for Reuben, it’s very rare that he’s cranky. He’s always a happy-go-lucky child and we are very fortunate.”