Saturday, 29 April 2017

Self-Centric "Advice" From Medical Know-It-Alls

Mothers of Down Syndrome Children Encouraged to Terminate

Ruby Nyika

The mother of an unborn child with Down Syndrome says she was advised by medical professionals to terminate the pregnancy.  Antenatal screening meant Masterton mother of two Danielle Bolt knew her unborn daughter Noa would have Down Syndrome, but she did not hesitate in giving birth to her now 21-month-old.

Bolt was angry with the advice she was given and said doctors and nurses should change their approach.

Noa, who is 21 months old, with her father Joshua Matthews and mother Danielle Bolt.

Noa, who is 21 months old, with her father Joshua Matthews and mother Danielle Bolt.

"I was told to terminate by the specialist," Bolt said. "They literally said to me Noa will become a burden on society and she's not worth it.  It's so cruel because they don't know her potential."

Bolt, who went for Chorionic Villus Sampling (CVS) at Wellington Hospital, said she was called by staff, who apologised and told her that her daughter would have Down Syndrome.   Bolt was upset they felt the need to apologise about an otherwise healthy baby girl.
 "There's nothing wrong with her ... That approach there just devastated me," she said.   Bolt supported screening to prepare mothers for any health issues their newborn may have but, for her, termination was never an option.

Bolt said Noa can be cheeky and bossy but also "the best big sister" to her five-month-old sister Maisy.  "I just hope that she's accepted, more than anything … a whole change in attitude is what I'm looking for."

Chris Lowry, Capital & Coast DHB general manager hospital and healthcare services, said they were looking into concerns raised by Bolt through their complaints process.  "We sincerely apologise to Danielle that comments made by our staff were insensitive," he said.

Lowry said when a patient received a positive screening test for Down Syndrome, or other conditions, their Maternal Fetal Medicine service were there to support the family through any decision they make.  "Termination is one of several options discussed, as is continuing the pregnancy. All options available are discussed without judgement or encouragement.  If a woman wishes to stop her pregnancy then information, counselling and support are provided.  If a woman chooses to continue the pregnancy, she and her family are supported."

Palmerston North woman Ruth Eder also received antenatal results showing that her daughter might have Down Syndrome and, like Bolt, was encouraged by doctors to terminate the pregnancy.  Eder describes her now one-year-old daughter Alexandria as a "pure heart-breaker.  She's full of smiles and giggles and love," Eder said.

Eder, who is pregnant with her second child, worked in catering at the Palmerston North hospital while she was pregnant with Alexandria and said there was a culture of "fear mongering".  "I had friends who were orderlies and things telling me that 'oh many of these cases, they don't come out nice … the doctors are recommending a termination, you should be going for it'," Eder said.  She said she and her husband were told most couples had amniocentesis after their first screening if it indicated a likelihood of Down Syndrome, so they could decide whether to terminate.

"If it wasn't for our faith I honestly think we might have listened to the doctors and had an abortion," she said.   I actually go around now and talk to people and say, this is the child they told me I should have been terminating."

 Ministry of Health national screening unit clinical director Dr Jane O'Hallahan said the screening processs was optional, offered to provide women with more information about their pregnancy.  O'Hallahan said it included the option of giving birth in a setting that had access to specialist surgical or medical services or the possibility of considering termination.  "Termination of pregnancy would not be offered following a screening result," she said.

"This screening offers women information that may help them prepare for the birth of their child, including the option of giving birth in a setting that has access to specialist surgical or medical services, the possibility of considering termination or palliative care in the newborn period.  Health practitioners must respect and support any decision made by women throughout the screening process."

Both first and second trimester maternal serum screening blood tests were publicly funded.

Midwife advisory in quality assurance at the New Zealand College of Midwives, Jacqui Anderson, said she had not heard of terminations being encouraged.  "I have not seen women made to feel pressured to have terminations," Anderson said.

"It is impossible to know what the experience is of every woman in this situation," she said. "In my experience caring for women in this position, they are given information about the options open to them in a neutral, non-judgmental way."

Community Living Trust chief executive Marese McGee was surprised that women had felt encouraged to terminate during such a stressful time in their lives.  Community Living Trust is a non-profit organisation that supports people with intellectual disabilities to live fulfilling lives of their choice.  "There's two models in operation," McGee said. "The social modal we aspire to and the medical model that's been around forever. The medical model is about curing people, and when you can't cure people what do you say?"

McGee said it was a problem that new mums straight away hear all of the problems associated with a disability, which can rob them of the joys of having a newborn.   "What is the perspective of the medical model that is imposed on people when they're at their most vulnerable?" McGee said.  "It's about seeing the person that's there, not the disability … It's about giving people opportunities," McGee said.

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