Saving Downs and Spina Bifida New Zealand have mounting evidence that parents are being put under undue pressure to terminate wanted pregnancies when receiving a positive diagnosis of conditions such as Down syndrome and Spina Bifida. Our group positions are that children should not be selected based on their biological difference or disability and that we consider such practices to be discriminatory and eugenic. We advocate that antenatal screening should exist only to provide unborn children diagnosed with Down syndrome, Spina Bifida and other conditions and, more importantly their families, with life-affirming, unconditional and unbiased care, support and accurate information about living positively with these conditions.
When the International Criminal Court announced their preliminary examination into our complaint against the New Zealand screening programme we started to gather evidence around parents experience with the programme. We are now seeing an emerging, and disturbing, clear pattern of inappropriate behaviour towards parents expecting a special needs baby.
We have decided to raise awareness of this issue and share a number of mother’s testimonies as we consider this an important issue of social justice for our communities. We hope that in doing so we will plant the seeds of positive change so that future parents can have a better pregnancy experience than those that we share below. Then as a community we can start the process of healing from this behaviour that devalues the lives of our beloved children and ultimately damages families.
In sharing this information it is important to understand the context of New Zealand law around abortion, particularly with regards to pregnancies involving conditions such as Down syndrome and Spina Bifida. This is covered under section 187A of the Crimes Act. This provides for abortion for foetal abnormality where:
“in the case of a pregnancy of not more than 20 weeks’ gestation….
…that there is a substantial risk that the child, if born, would be so physically or mentally abnormal as to be seriously handicapped”
The law also provides for late term abortions (those beyond 20 weeks’ gestation) where:
“in the case of a pregnancy of more than 20 weeks’ gestation, the person doing the act believes that the miscarriage is necessary to save the life of the woman or girl or to prevent serious permanent injury to her physical or mental health.”
So, foetal abnormality is not a ground for an abortion beyond 20 weeks gestation. There is no provision in New Zealand law for either euthanasia or infanticide after birth, both are criminal acts.
Each of the testimonies listed below involve mothers with wanted pregnancies who have advised their health providers that abortion is not an option for them. Each of them has approached Saving Downs or Spina Bifida New Zealand with their concerns in the hope that the discrimination of disability directed abortion can be stopped. All of the stories involve recent experiences under New Zealand’s public health system.
So let’s get underway with some of the mother’s experiences. Keep in mind the 20 week cut for foetal abnormality being a ground for an abortion in New Zealand.
A mother whose child was diagnosed with Down syndrome at Auckland Hospital:
“I was offered a termination in New Zealand up to 24 weeks”.
Another mother, whose child was diagnosed with Down syndrome at Auckland Hospital, was offered a termination at a consultation beyond 20 weeks gestation. She was offered a further review of the pregnancy:
“….if continuing the pregnancy”
Another mother, whose child was diagnosed with Down syndrome at Auckland Hospital:
“I was put under enormous pressure to terminate throughout my pregnancy. If I wasn’t a strong woman with a supportive husband I would have given in to the pressure”.
A mother of a child with Spina Bifida was offered a termination at 28 weeks at two Auckland hospitals – there were other babies in the special care unit at the same time that were born at 26 weeks. She was left wondering:
“Why the doctors were trying so hard to save these tiny babies lives yet didn’t place the same value on her child”.
The doctors suggested that the hole in the baby’s spinal column be left open after birth and she was advised to:
“Choose leaving the hole open so the baby gets an infection and is allowed to die”.
My personal view is that non treatment of Spina Bifida resulting in death after a baby is born is a form of euthanasia or infanticide.
I was advised recently of a termination of an unborn baby with Down syndrome at 27 weeks gestation at a South Island hospital.
Late term terminations are also being offered to parents at Waikato Hospital. We are aware of a case involving a baby diagnosed with Spina Bifida:
“Termination was offered at 31 weeks gestation.”
And another where:
“Termination was offered after 20 weeks gestation”
Those parents were also informed that:
“They had the option of non treatment resulting in death after the baby was born.”
Several members of Saving Downs have been offered terminations for Down syndrome beyond 20 weeks gestations.
Our own family doctor advised us after Rebecca was born to:
“Be sure next time that you have all the proper tests”.
That’s an insidious suggestion that we failed to prevent her birth. That offends the dignity of our daughter and us as her parents.
This from a mother who already has a child with Down syndrome, at a consultation for a subsequent pregnancy:
“You already have a Down syndrome child so this must be daunting for you”.
As parents they thought these comments were unprofessional and disrespectful towards their child, and I agree. After explaining that they wanted the ultrasound and blood test to be prepared, but no diagnostic tests, the specialist explained the screening process and told them:
“If the percentage was high risk then we could choose to have an amniocentesis and ultimately a termination would be organised.”
They then had to explain again that they did not want to terminate and were only there to be prepared. There appears to have been an underlying assumption that a termination would automatically follow a positive diagnosis.
So we’re starting to see a clear pattern of inappropriate behaviour here from a section of the New Zealand medical community. Encouraging women to take the life of their baby is unethical. It lowers the dignity of the parents and their baby. It devalues the lives of all people who live with a disability. It needs to stop. This type of discriminatory and negative bias towards our community has no place in a civilised and compassionate society.
There is no question that there are many good medical practitioners in New Zealand who treat parents in these situations with compassion, respect and dignity. It is our desire that this level of care be extended to all parents. In fact there are many good medical practitioners in New Zealand who support our important advocacy and support us in a number of valuable ways.
Parents with wanted pregnancies that receive an unexpected diagnosis deserve compassionate care and support throughout their pregnancy. A condition such as Down syndrome or Spina Bifida should not been seen as an opportunity to select the type of child but an opportunity to welcome and support another life into our community. And support is available for parents making this journey through organisations like Parent 2 Parent, the Therese Programme and the New Zealand Down Syndrome Association, so parent’s need not feel afraid.
At Saving Downs and Spina Bifida New Zealand we are committed to improving the standard of care to parents facing a diagnosis. That is why, for example, we advocate that parents with a diagnosis must be referred to a person with the relevant condition or a family member who has direct, current, relevant and accurate knowledge of that condition. Such information would seem a very important part of informed consent.
Current screening and diagnostic guidelines in New Zealand only mandate a referral to a medical specialist. We believe that accurate balanced information is best provided by those with lived experience or from medical professionals (such as Paediatricians) who understand the conditions well and provide support to other families. But the reality is that Obstetricians (the medical professionals most likely to see parents at the point of initial diagnosis) do not have this experience, or that their experience is limited to medical factors straight from a textbook, rather than the wider social factors that are relevant to those that live with different conditions. As we have seen in the above testimonies there is a negative bias against the worth of people with so-called disabilities and that is something that needs to change.
Statistics bear out the fact that 70% to 90% of families are damaged because of disability directed abortion. For many, this scar never heals. In sharing these stories with our communities we can start the process of positive change so that future parents are treated better. Then as a community we can start the process of healing from this behaviour that devalues the lives of our beloved children and ultimately damages families.
As usual we encourage discussion and ask that in sharing stories we are gracious in advocating for our communities.