Should parents have the right to stunt the growth of their severely disabled child to make them more physically manageable? It's an ethical debate that's raging in New Zealand, and the subject of Dateline's Growing Pains story.
Daryl-Ann Fehsenfeld is undergoing hormone treatment, or Growth Attenuation Therapy, to make caring for her needs easier and more practical for her mother Janine.
The nine-year-old has cerebral palsy and microcephaly and is unable to do anything without help. Janine argues if she grows much bigger, Daryl-Ann won’t be able to enjoy many of the activities like swimming and trampolining that bring joy to her life today.
“The taller she gets, the more her world gets smaller, the less she gets to do,” she tells Dateline. “We really didn’t want to have to have hoists and equipment and all of that thing coming between us.
"It was just so sensible. Why wouldn’t we do it? It just seemed so natural.”
Janine is one of a handful of New Zealand mothers who have pursued Growth Attenuation Therapy, but it's not the first case to raise ethical questions around care of the disabled.
Voluntary Euthanasia
Lawrie Daniel is a supporter of voluntary euthanasia. He’s 50-years-old, has multiple sclerosis and lives in constant agony.
In a compelling letter submitted to Victoria’s recent Inquiry into End of Life Choices, he details his argument for why voluntary euthanasia should be available to people in cases like his.
Daniel is plagued by constant fatigue, uncontrollable spasms and seizures, continence issues and searing nerve pain. He moves from his electric wheelchair to an electric bed and is unable to control his pain with medication. Furthermore, he fears he could lose his ability to see and speak if his condition worsens.
“Let me tell you that there are some things that are worse than death,” Daniel writes.
“There is nothing that can be done for me medically for my ‘MS’ since I am progressive. I am not being palliated, I am not being made ‘comfortable’, I am not in suitable accommodation, I am not in a position to find purpose and meaning in my life despite my disability, and I am forced to live (if you can call it living) because I don’t have the option to end my life to escape what is being imposed on me by the inhumanity of the system.
“If I owned a dog like me, I would have compassionately and painlessly ended its suffering years ago,” he adds.
Daniel hopes to be shown the same compassion regularly offered to suffering animals. He wants the opportunity to discuss his decision to die with his friends and family before holding a small ceremony and going “peacefully and painlessly”.
A Vote Compass survey conducted by the ABC last year revealed that 72 per cent of people surveyed supported voluntary euthanasia however the debate surrounding it is a complex one.
Opposition to the idea often raises concerns about whether the rights of vulnerable people will be undermined and their decision to die be influenced by coercion and outside factors such as the high costs often associated with keeping them alive. The view that human life should be respected and preserved is also central to the debate.
Genetic Engineering
The debate surrounding the genetic engineering of foetuses is a controversial one but had it been available at the time of his conception, Edward Bernardi may still be alive.
Bernardi died at age 21 after he was diagnosed with Leigh Syndrome as a child. The rare neurometabolic disorder is a mitochondrial disease that is passed from the mother’s genes and results in the degeneration of the nervous system. Bernardi experienced the progressive loss of mental and physical abilities and a year before his death, was suffering from extreme spasms that would leave him screaming in pain for hours on end.
In the UK, where his family lives, it is now possible to undergo a modified version of IVF called mitochondrial replacement that uses the DNA of three people to eliminate the chances of passing on a mitochondrial disease.
Mitochondria generate the energy cells require to function and are only passed on by women. In cases where a mother has unhealthy mitochondria, the nucleus of her egg is removed and planted into the egg of another woman whose mitochondria are normal. That egg’s nucleus – which is the part that passes on appearance and personality traits – is destroyed along with the abnormal mitochondria.
The procedure is used to prevent the transmission of sever mitochondrial diseases and Bernardi’s mother Sharon tells the BBC that “without a heartbeat I would have gone for this [mitochondrial replacement]”.
The UK is the first place where mitochondrial replacement is legal after clinics in the US were asked to stop doing a similar procedure by the federal Food and Drug Administration in 2002.
Ethical questions have been raised about the children born in this way having a genetic connection to three people and the impact on their identity that this may have. There are also concerns over safety and the modification of genetic heritage that cannot be reversed, as females born from a mitochondrial replacement will pass their genes on to the next generation.
Terminating Pregnancies
American mother Courtney Baker has a 15-month-old daughter with Down syndrome. She was told that Emersyn had the genetic condition while carrying the child but was appalled when her doctor recommended she terminate the pregnancy.
It was a course of action she refused to take, and in an open letter to the practitioner which she shared on Facebook this month, Baker explains how she felt pressured to not keep her child.
“A friend recently told me of when her prenatal specialist would see her child during her sonograms, he would comment, ‘He’s perfect’,” she writes. “Once her son was born with Down syndrome, she visited that same doctor. He looked at her little boy and said, ‘I told you. He’s perfect’.
“I came to you during the most difficult time in my life. I was terrified, anxious and in complete despair. But instead of support and encouragement, you suggested we terminate our child. I told you her name, and you asked us again if we understood how low our quality of life would be with a child with Down syndrome. You suggested we reconsider our decision to continue the pregnancy.”
Far from lowering her quality of life, Baker says her daughter has given her “a purpose and a joy that is impossible to express... She’s given us bigger smiles, more laughter and sweeter kisses than we’ve ever known. She’s opened our eyes to true beauty and pure love.”
Doctors have an obligation to tell their patients the facts of their diagnosis but Baker feels it was “very wrong” for her to be recommended to terminate a baby with Down syndrome. Abortion for any reason raises ethical issues over the sanctity of human life.
The other side of the debate meanwhile, argues that it is “immoral” not to abort a pregnancy when the foetus has been diagnosed with Down syndrome, with scientist Richard Dawkins saying in 2014 that parents have a responsibility to terminate.
