Clinicians must better respect children's 'agency,' ethicist says

By Louise Kinross

The other day my son had an interview to volunteer in a cat adoption centre in a PetSmart.

He can’t speak and doesn’t have a robust form of alternative communication, but he can use some sign language.

That night, when I asked him about it, he signed that there were two cats. They were black and white.

(I’m now not sure if one was black and one was white, or if they were both a mix of the two colours, or if one was a solid colour and the other wasn’t. It’s amazing how much you can lose when communication is fuzzy).

They were small, he signed. He got to pet them. In his job he would feed them and clean their cages and do paperwork for adoptions.

“What were the cats’ names?” I asked.

 He made the sign for ice-cream (which in a different context could also mean “lick” or “lollipop”).

“Ice cream?” I said.

 No, he signed.

 Licky Tongue? This is a Pokemon character he used to like.

 No.

“What is the first letter in the name?” I said. I grabbed a piece of paper, a pen and a book he could write against and thrust it upon him.

I felt like a desperate contestant on a game show.

He kept repeating the original sign. He didn’t want to write down a letter because it’s hard for him to write.

“Please, just the first letter.”

Finally he wrote an “L.”

“L?” I asked.

Yes he signed.

“/l/” I said, sounding the letter out phonetically.

“/l/ is for lollipop,” I said, referring to the Jolly Phonics system we’d used years ago to teach him to read.

Yes! he signed exuberantly.

“Lollipop?” I said. Was this a clue or the answer? Unfortunately, the wheels don’t turn that quickly in my mind anymore.

“Lollipop is the name of the cat?”

Yes, he signed. Then he began to clap.

“The cat this morning was called Lollipop,” I yelled out enthusiastically to my husband.

I felt like I’d hit the jackpot on Jeopardy or just won a brutally competitive game of charades.

“What was the other cat called?” I said.

My son looked at me blankly. He got up and walked into his room. I couldn’t blame him for giving up.

About 10 minutes later I was still thinking about the cat called Lollipop.

One of the cats was black, he’d said. Suddenly “Licorice” popped into my mind. Licorice would be the perfect name for a black cat.

I raced into his room: “Is one of the cats called Licorice?”

“Yes,” he signed.

“Licorice and Lollipop!” I exclaimed. I gave him a high-five and screamed out the news to my husband.

Then I texted the worker who was with Ben that morning. “Was one of the cats called Lollipop?”

Sometimes my son gets so frustrated with our inability to interpret what he’s saying that he’ll sign “yes,” just to get me off his back.

“Yes,” the worker wrote back. “He read the cat’s name on the adoption paper.”

“Licorice?" I typed in. “What about Licorice?”

“Yes.”

It had taken about 30 minutes to determine that the cats Ben saw were in fact called Lollipop and Licorice.

But what if I’d stopped guessing after getting “ice cream” wrong?

I shared this tale last week at a talk by Dr. Franco Carnevale, ethicist and psychologist at McGill University. Dr. Carnevale worked for decades as a nurse in the pediatric intensive care unit at Montreal Children’s Hospital. 

Dr. Carnevale asked how we can better hear the voices of disabled children in healthcare, particularly those with intellectual disabilities or who can’t speak. The question is on the agenda of VOICE—an interdisciplinary research team he’s leading to identify and address ethical issues in Canadian children.

Dr. Carnevale encouraged us to think of children as agents “who have a capacity and intentionality to engage and form meaningful preferences and to direct those preferences in a way that matters. They have an intentional, meaningful engagement with things that matter to them.”

He said the concept of a child’s best interests must be “highly informed from the child’s agency, from their expression of interests.”

This is particularly challenging when a child can’t communicate in conventional ways. “We consider all young people as vulnerable, but there are all kinds of ways that young people who have any form of compromise in their expressive capacity are additionally vulnerable and marginalized," Dr. Carnevale said. “We don’t have a clear way of understanding how things matter to them. Does that mean their voices matter any less?”

Dr. Carnevale spoke about how solving ethical issues in medicine usually centres on the child’s “best interests. But there’s no agreement on what that is," he said. “When we do case consultations, people make rival claims on what is in this child’s best interests.”

He noted inherent problems with the way we assess best interests.

“The interests are being evaluated and declared by adults without the recognition that adults have interests that may not be congruent with the child” he said. “There is an inescapable subjectivity when adults—healthcare professionals and parents—assert what is in the child’s best interests.”

Dr. Carnevale said we tend to systematically underestimate children’s ability to participate in treatment decisions. In addition, our understanding of capacity is poorly developed and often arbitrary. “You either have capacity or you don’t,” he said. “There’s a threshold. If you’re below that, what you want and how it matters has no ethical weight. I worry deeply about the common ‘all or none’ tendencies among clinicians' views of mental capacity.”

When considering what’s best for a child, “suffering” and quality of life are discussed. “But almost always these are incongruent with how people with disabilities themselves describe their quality of life in studies.”

Dr. Carnevale said the treatment teams who make life or death decisions about whether to continue or withdraw care don’t have experience with children who survive prematurity or injuries with medical complexity or disabilities. “We’re imposing highly uninformed concepts of quality of life with the illusion that they are objectively verifiable.”

Clinicians need to strive for empathic attunement, he said, which he described as “not just trying to get the emotive sense of a person, but trying to get what that person’s perspective is like. We need to find a way to foster intellectual humility on very complex concepts.”

As a reminder that medical beliefs can be based on biases, not science, he recalled that when he began nursing in the 1970s clinicians didn’t treat pain in newborns. That’s because they believed newborns didn’t feel pain. In fact, studies now show newborns may have a heightened sensitivity to pain.

Dr. Carnevale said he’s horrified to recall how he and other clinicians performed painful procedures on infants, without pain control, despite the fact that the babies grimaced.

Is it possible that we misjudge capacity, and what matters to a child, in a similar way?

How can we be so sure of a child’s inner world when they can’t express it in ways that we understand? 

Dr. Carnevale said our concept of best interest must be “maximally informed by the child’s own important information on how things affect them. I worry that we too readily dismiss the importance of taking the required time to understand, by conflating communicative difficulties with experiential compromise. It's easy and tempting for someone who is rushed to assume all words are meaningless.” 

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Is newborn euthanasia an answer to parent pain?

By Louise Kinross

I was surprised to see this headline on a CBC The Current story yesterday: Newborns should have the right to die, ethicist says. Can newborns assert their rights?

The piece is framed as a discussion about euthanasia for newborns with severe, terminal illnesses.

One of the guests is Udo Schulklenk, a professor of philosophy and the Ontario Research Chair in Bioethics at Queen’s University.

He wrote a paper defending euthanasia of some infants with severe, terminal conditions.

During the CBC interview, the Dutch Groningen Protocol is referenced. The waters get muddy here as this protocol supports euthanasia not just for infants who will die imminently, but for those who have a poor prognosis and expected quality of life. For example, “a child with the most severe form of spina bifida will have an extremely poor quality of life, even after many operations,” write the authors of this paper describing the protocol in the New England Journal of Medicine.

Spina bifida is not a terminal condition (please see Deliberate termination of life of newborns with spina bifida, a critical reappraisal). 

The CBC interview doesn't make clear that the practice in the Netherlands includes euthanizing newborns with severe disabilities who are not terminally ill.

Udo argues that “once professionals have decided that further treatment would be futile and it’s a hopeless case, we ought to take into consideration whether or not the parents really want to sit by while treatment is withdrawn and while there is a prolonged period of time until eventually the newborn expires.”

Udo is referring to the process whereby nutrition and hydration provided by a nose or stomach tube is stopped and the child dies within days or weeks.

In 2013 the Royal Dutch Medical Association made a similar argument in a policy (click on English press release) that supports giving a lethal injection to newborns with serious birth defects whose tube feeding had been withdrawn, because watching them die “causes severe suffering for the parents.”

Typically, Dutch pediatric medical ethics and law in children’s treatment decisions are based on “the child’s best interests”—not parent interests.

At the time, I asked Dr. Franco Carnevale, a psychologist, nurse and ethicist at Montreal Children’s Hospital, if the argument to include “parent suffering” as a basis for a child's treatment decision is problematic.

“The 'child's best interests' was created to protect the voiceless vulnerable," Dr. Carnevale said. “Any time that the suffering or interests of others in a powerful position can trump the interests of the powerless in medicine, this is a direct breach of their rights. This would treat children as objects that are only worthy in terms of the pleasures they can bring, rather than humans with their own individual rights and interests that should be protected.”

Dr. Stephen Liben, interviewed on CBC yesterday, disagreed with Udo Schulklenk that relieving parent suffering is a rationale for newborn euthanasia. 

“What Udo is speaking to is the suffering of the parents who are watching their child die and it’s true, we can’t remove that suffering," said Dr. Liben, director of pediatric palliative care at Montreal Children's. "Children for the most part aren’t in pain, but the parents are in pain.

“The argument is being made that if you just end their child’s life now, their suffering will end sooner. I think that’s an argument that’s naïve... Is their suffering really over because their child has died? The suffering of the health-care professionals ends pretty quickly, we move on to the next patient...But for the families, how do we know how they feel years later, when a mother looks at a handicapped child smiling and laughing…and thinks ‘my goodness, how could I have asked the doctors, or allowed them, to end the life of my child?’”

When brain scans show severe brain damage in a newborn, Dr. Liben said, the decision is sometimes made to stop tube-feeding. But predicting how a newborn will be affected by brain injury is imprecise. “We're not really good at predicting what’s going to happen,” Dr. Liben said. “We have an idea of what the damage is, but we don’t really know for weeks and even years...to know how those kids will be.”

Dr. Liben was asked whether parents ever change their minds when they’ve chosen to withdraw artificial feeds from their infant. “I’ve seen that several times now,” he said, explaining that in these cases “we start the feeds again” and the children have lived, though "I don't know what's happened to them 20 years later.

“I’ve also seen parents change their idea from Oh, my poor child, this is so horrible” to returning two to three years later to say “The doctors have to do more. I love my child, he’s handicapped, but he...interacts with the world.”

Rather than talking about euthanasia, Dr. Liben said we need to “improve access to palliative care. “I’ve been doing this for 20 years and I shudder to think of what could happen” if euthanasia of newborns was practised.

“Given the way healthcare really works—the way it isn’t all studied doctors and nurses who are comfortable with these things without prejudices in their own minds left, right and centre. Things don’t happen rapidly and equally. The real world out there is there aren’t ethical committees that rapidly convene with intelligent people discussing things all day long.

“This is not what goes on across the country and if the law changes it applies to everybody and I think there’s way more harm than good. Looking at our healthcare system I just see that it would be abused. Is it just coincidental that it’s going to be a cheaper way out for government and for certain hospitals that are under pressure? I don’t have confidence enough in the human factor that we can manage this humanely.”

Take a listen to the CBC piece. Much food for thought.

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Does disability make you a less worthy transplant recipient?

Two little girls with genetic conditions that include intellectual disability needed a life-saving organ transplant.

One, in Philadelphia, needed a kidney. The other, in Chicago, needed a heart.

The first, three-year-old Amelia Rivera with Wolf-Hirschhorn Syndrome, was turned down for a kidney transplant in 2012 because of her ‘mental retardation,’ according to her parents. “She is not eligible because of her quality of life—because of her mental delays” the parents said a nephrology doctor told them.

Special-needs parents lit up the blogosphere in protest and over 50,000 people signed a petition at change.org asking the Children’s Hospital of Philadelphia (CHOP) to reconsider its decision. All the major media networks ran news stories on the case and CHOP reversed its decision. Last year Amelia received a kidney transplant from her mother and is thriving.

The second girl, a baby dubbed “Annie Golden Heart” on a Facebook page run by her parents, had Down syndrome. She was in heart failure, but was ineligible for a new heart because of her disability. Last week, she died at age two. Despite her Facebook page, Annie's story didn't garner the media clout to influence hospital policy like Amelia's had. I wonder how her parents explained her death to her two older sisters?

This change.org petition questions why children with Down syndrome are not considered candidates for organ transplants. It has almost 40,000 signatures, but it hasn’t caught the imagination of the media.

Last year CNN reported on a five-month-old baby with a heart defect who was okayed for a heart transplant, only to have this decision reversed two days later when it was discovered that the child had a genetic condition. The doctors said his genetic condition compromised his immune system, making him a poor candidate for transplant, and told the parents to take him home and love him till he died. His mother went online and researched the syndrome, reading studies and contacting the expert her son's syndrome is named after. The study authors and the expert said that the condition is not associated with immune problems and is not a reason to deny the child a transplant.

The syndrome is, however, associated with intellectual disability and there’s a long history of categorically excluding people with intellectual disability from eligibility for transplants; they’re not seen as worthy of these scarce resources.

The Autistic Self Advocacy Network has published an excellent toolkit on transplant discrimination based on disability.

In its Guide for Clinicians the authors note that “the most common barrier is the misconception that people with disabilities—especially those with intellectual, developmental, or psychiatric disabilities—are unable to comply with post-operative treatment regimens and that, as a result, people with disabilities have a lower likelihood of transplant success. In addi­tion, providers may incorrectly assume that people with disabilities have a lower quality of life than people with­out disabilities and therefore would not benefit as much from life-saving transplants…”.

The guide includes recent studies that show that with adequate post-surgery care, people with intellectual disabilities have survival rates for kidney and heart transplants that are comparable with those in the general population.

The guide includes case studies, like the one of a 9-year-old boy with autism who needed a heart transplant. Two transplant centres refused to even evaluate the boy, who types to communicate, based on his disability.

In its toolkit on transplant discrimination, the Autistic Self Advocacy Network says that “as early as 1992, the U.S. Department of Health and Human Services took the position that deeming people with disabilities to have a lower ‘quality of life,’ and refusing health care on that basis, would violate the Americans with Disabilities Act.”

It goes on to say that “Clinicians’ estimates may, as a result of their own ‘horror of handicap,’ dramatically undervalue the actual quality of life of disabled patients. In reality, people with significant developmental and intellectual disability—including those who need assistance with basic tasks, those with co-occurring physical disabilities, and those who do not communicate using language—may lead long, rich, and fulfilling lives in their communi­ties. Moreover, patients with disabilities who received or­gan transplants may experience marked improvements in quality of life.”

Ironically, two days before “Annie Golden Heart” died last week, a state lawmaker from Philadelphia introduced legislation to end discrimination against people with disabilities in need of organ transplants. The bill, spurred by the fight of Karen Corby, whose 24-year-old son Paul, with autism, needs a heart transplant but isn’t eligible, is called Paul’s Law. “...To find out that he is not a candidate for a heart transplant—which is the only cure—because he's autistic, is the most terrifying thing a parent can go through," Karen Corby said.

Last year, Dr. Art Caplan, a bioethicist writing for MSNBC online summed up the situation beautifully: “Children with intellectual disabilities do not appear on transplant waiting lists with the frequency that should be expected…There are reasons why anyone with an intellectual or physical disability might not be considered a good candidate for a transplant. But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases.”

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Rain, BlogHer and child vs parent interests

Ben's favourite weather is rain. When he gets up in the morning he looks for clouds and dark sky out his window. He's been known to appeal to the heavens, clasping and shaking his hands, for rain. I'm not sure why he likes it so much. Perhaps because it's cool and refreshing: he tends to overheat in the sun and doesn't mind getting wet. Probably because it strikes him as funny: the skies opening up with water, as we humans scurry for cover, the potential for jumping in a large puddle, the tap tapping on our roof. 

During the flooding in Toronto last week he was in heaven.

On July 25 I'll be speaking on a panel at BlogHer '13 in Chicago. Let me know if you plan to be there! The session is called Special needs and caregiving: Changing policy and perception. I'm speaking with Julia Roberts (SupportforSpecialneeds.com), Christina Shaver (Hopeful Parents) and our moderator is Jen Reeves (Born Just Right. I have followed each of these bloggers and am thrilled to meet them in person.

Ben is off to his beloved Camp Kennebec in a week. Meanwhile, D'Arcy left for Nicarauga this morning to volunteer at Outreach360, a non-profit that runs centres where disadvantaged children can learn to read and write (in Spanish and English). Our dear friend Coco (who first taught us sign language and spends a week at Camp Kennebec with Ben each year) is the director of the program. D'Arcy has been fundraising for the group and yesterday picked up some donated school supplies from Staples. For months he's been sitting on the porch listening to Spanish tapes and repeating phrases. Sometimes when the kids phone he'll speak in Spanish, until they hang up! Finally, he'll have someone to understand him.

A Canadian ethicist told me about a new policy from the Royal Dutch Medical Association (click on the English press release) that supports giving a lethal injection to disabled newborns—whose artificial feeds have been withdrawn—because watching them die "causes severe suffering for the parents."  

Typically Dutch pediatric medical ethics and law in children's treatment decisions are based on "the child's best interests"—not parent interests.

The Groningen Protocol supports euthanizing Dutch newborns with a "hopeless prognosis" and "unbearable suffering." For example, "a child with the most serious form of spina bifida will have an extremely poor quality of life, even after many operations."  

I asked Dr. Franco Carnevale, a psychologist, nurse and ethicist at Montreal Children's Hospital, if the new move to include "parent suffering" as a basis for a child's treatment decision was problematic.

"The 'child's best interests' was created to protect the voiceless vulnerable," Dr. Carnevale said. "Any time that the suffering or interests of others in a powerful position can trump the interests of the powerless in medicine, this is a direct breach of their rights. This would treat children as objects that are only worthy in terms of the pleasures they can bring, rather than humans with their own individual rights and interests that should be protected."

Meanwhile, a memorial wall is being built in Berlin to honour the 300,000 children and adults who were killed during Hitler's euthanasia program for those with physical and intellectual disabilities.

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Selective abortion: A choice or a social expectation?

When I was pregnant with my second child I had an amniocentesis—not because I wanted one or knew how I would act on the information—but because I feared people would judge me if my second child was born with disabilities.

I feared people would say I'd chosen to have a child with disability, rather than that I'd chosen not to abort.

The testing was recommended because my first child had a random genetic condition. "I understand why you'd want to do everything in your power to prevent having a second abnormal baby," the obstetrician in the testing clinic said dryly.

I remained silent, not wishing to discuss my views on disability prevention or my son. The amnio came back normal and I didn't have to wrestle with my views on prenatal testing and abortion.

A week ago Andrew Solomon had an interesting piece in The New Yorker called Medical Progress, Social Progress, and Legal Regression.

While arguing against North Dakota's new laws that ban abortions for conditions like Down syndrome or spina bifida, he questions how informed decisions are when a woman doesn't have information about families raising children with the same condition her fetus has.

"Women often terminate a pregnancy without knowing what life would be like with and for an anomalous child," he writes. "It is worth publicizing the satisfaction that the experience may entail, so that the pro-choice movement becomes the pro-informed-choice movement."

Parents-to-be often "confuse how it feels to lose an ability (to be suddenly bereft of hearing) with how it feels to live healthily with a variant body (to be deaf all your life)," he writes. "Further, they confuse their own discomfort with their child’s."

Solomon points to a fascinating study that shows how people judge women who carry a baby with an identified disability to term or refuse prenatal testing. 

The survey asked 281 staff at a Canadian university and 341 Canadian doctors who work in obstetrics to rate three scenarios in which a woman's child is born with a disability. The first woman chose not to have testing, against the advice of her doctor. The second chose to continue her pregnancy after testing identified a disability. The third was not offered testing by her doctor.

Participants were asked to rate how responsible each woman was for the disabled child and how much to blame. They also had to score how much each woman deserved sympathy, and how deserving each was of social services and financial aid to help her care for the child.

"Numerous examinations of attributions for outcomes have concluded that individuals are held more to blame for a negative event when it is perceived as being under their control or preventable," the researcher notes.

Both the university community and the doctors rated the woman who chose not to abort her disabled fetus and the woman who refused prenatal testing as more responsible, more to blame, less deserving of sympathy, and less deserving of social and financial support for their child's care than the woman who wasn't offered testing.

"This examination is of pragmatic relevance because of a growing sentiment that prenatal testing can and should be used to meet public economic goals by reducing the financial burden that disability places on the medical and social welfare systems, and that women who do not use it to prevent the birth of a disabled child should be held financially or legally accountable."

The key phrase here is "prevent the birth of a disabled child." Abortion doesn't prevent disability. It prevents the birth of a child who has a disability. They are two quite different things. 

I was surprised to see that this study was 10 years old. I think public opinion about women who don't abort for fetal disability has hardened since then.

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A dark chapter in medical research

 

ReelAbilities is a New York film festival that gives voice to stories about people with disabilities. This Friday Willowbrook (above) is being screened. It's a disturbing account of researchers who injected active hepatitis virus into healthy children with intellectual disabilities when they were admitted to an institution as part of a medical experiment.

"...most ethicists see Willowbrook as an example of medicine run amok, in which overzealous researchers did harm to an exceptionally vulnerable population," says this recent Well blog in The New York Times.

One can only surmise that these doctors felt that children with intellectual disabilities fell outside the protections afforded children with regular IQ.

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Health: Does it come in all shapes and sizes?

Last month I sat in on a bioethics session where health providers discussed 2012 media stories with a health ethics angle.

One was about using costly growth hormone in kids who are short (but who are healthy, not growth-hormone deficient and otherwise typical).

In this National Post story, two parents in a custody battle couldn’t agree on whether their healthy son should receive daily growth-hormone shots at a cost of $30,000 a year over many years.

In this case the healthy boy’s predicted adult height without the injections was 5’3.” Growth-hormone treatment might give him an additional 1.5 inches.

One health professional at the bioethics talk questioned whether it was fair to deny a child the opportunity to do something in adulthood that depends on size—like being a firefighter—by restricting growth hormone treatment. What if a healthy but exceptionally short child has dreams of fighting fires?

Because I was once a parent demanding growth hormone for my son Ben—whose short stature stems from a genetic condition—I understand how extreme shortness can be viewed as a physical disability in a world designed for big people.

However, having given my son shots of growth hormone six nights a week during a six-month trial many years ago, I question the treatment of what I now believe is more of a social, than physical, disadvantage.

Can't we promote a vision of health that is more inclusive of different body types?

Can a gain of one or two inches in final height justify daily shots over a decade that cost as much as a mortgage?

There are all kinds of studies showing that tall people make more money and have other advantages in life. This 2004 Journal of Applied Psychology study found that a person can earn an extra $789 per year for every inch above average height they are.

“There's plenty of evidence to suggest that height—particularly in men—does trigger a certain set of very positive, unconscious associations,” notes Malcolm Gladwell in Blink, the bestseller about how we make snap judgments.

Just before Christmas I was driving home and heard a CBC radio interview with bestselling author and New Yorker staff writer Adam Gopnik. I haven’t read any of Gopnik’s eight books but I have read some of his brilliant writing in The New Yorker.

When asked “If you could change one thing about yourself what would it be?” this is how he answered:

“I wish I just had six inches vertically because I am a very short man and unfortunately and truthfully being short is a deeply limiting condition in every sense. I think that if I had been somewhat taller my life would have taken a completely different line. And though people don’t admit it, the sense that the short are fundamentally jumpy, nervous and needy is built into that and the tall man is always the man who is the calming leader.”

For someone who’s achieved remarkable success in his career, Gopnik’s wish to be taller struck me as unimaginably sad. I think he's right about the prejudice against short people. But to go through life in a healthy body feeling that your height prevented you from a certain greatness makes me shudder. What kind of world are we living in?

Instead of being gatekeepers to drugs that are driven by the social stigma of being short, how can we work for a world in which a child’s opportunities don’t depend on height and other attributes of appearance? Wouldn't that be a kind of disease prevention—with huge savings in medical and psychological costs? What can be done to change public attitudes so that we expand our notions of health? Can't wellbeing come in all shapes and sizes?

My son’s trial on growth hormone didn’t work and we took him off it.

But sometimes I imagine how I would have felt if we’d given him shots six nights a week for 10 years, and then had to face up to the fact that he was one or two inches taller than what he'd have been without it. I know I would have been wracked with guilt and the sense that I'd made the wrong choice. At the time I was gung-ho to reduce the limitations a genetic syndrome placed on my son. But it's painful to remember the times my younger daughter would alert my son that I was getting the needle ready and he would run to hide in a different part of the house.

To think that this treatment is gaining use with families of children who are otherwise healthy is troubling.

I think we have a critical role to play in challenging stigma so that kids and adults can live in the world without interventions to make their bodies fit social norms.

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Answering your question on withdrawal of fluids in newborn

On Friday a parent posted this question on the BLOOM blog:

"Is it routine to withdraw fluids and nutrition from infants in the NICU? That is what we were offered for our son in hospital after we removed the ventilator and put a DNR on his chart and waited for him to die. He didn't die. He didn't need a g-tube, he was able to breastfeed and get enough nutrition for himself yet it was offered to us to just stop feeding him orally, give him morphine for the pain and let him go. Is this sort of thing common?"

I contacted Dr. Jonathan Hellmann, who is clinical director of the neonatology unit at the Hospital for Sick Children in Toronto for clarity on how to answer this question.

Dr. Hellmann authored a paper earlier this year about parent perspectives on withdrawing intravenous fluids in newborns with severe neurological injury or disease where the decision to stop life-sustaining medical treatment such as ventilation is made (Withdrawal of artificial nutrition and hydration in the Neonatal Intensive Care Unit: parental perspectives). None of the newborns in the study could safely be fed orally.

According to the study, in addition to requiring the full support of the parents and the senior medical staff and team, the practice of withdrawing artificial nutrition and hydration requires "the clear demonstration of the inability of an infant to safely tolerate oral feeds (oral feeding was regarded as routine care even in those in whom it took many hours to achieve a satisfactory intake.)"

Given this criteria, I asked Dr. Hellmann whether withholding milk from a baby who is able to breastfeed -- as reported above by the parent on BLOOM -- fell outside the practice of withdrawal of artificial fluids and nutrition.

Dr. Jonathan Hellmann: Your interpretation is correct. Only if the feeding is regarded as medical treatment i.e. requiring tubes, IVs, lines etc. is it ever our practice to possibly raise the issue with parents of a profoundly affected infant. If the child is able to tolerate feeding it is absolutely not acceptable to consider withdrawal of hydration and nutrition. I am extremely concerned that individuals might interpret our findings without every effort being made to feed even small sips, and only when it is unsafe to potentially raise the issue. It is certainly not common practice here and requires very careful consideration in every case.

I hope the parent who posed the question above sees this blog and lets us know if she has more questions.

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What message do we need to convey?

At the Certain Proof screening last week, many said we had to be more vocal in telling our children's stories, and in making those stories mean something to the average person.

I later wrote a piece that touched on the negative picture of parenting kids with disabilities that often emerges from research on parent and sibling health, from media stories about families who are desperate for services, and from general attitudes about disability.

I had a most interesting discussion with a friend who suggested that this negative picture may be feeding the stereotype among doctors and the public that life with disability isn't worth living.

With tremendous pressure to contain health costs, she said, we may see an unexpected effect: doctors and government officials making a case for not saving as many children in the NICU, not putting in as many traches, and not giving parents a choice about raising a child or withdrawing care.

At a presentation on care for children with complex medical needs at the National Symposium on Integrated Care last week, it was noted that the most medically complex kids make up less than one per cent of Canada's child population (67 per cent), but eat up 33 per cent of health-care costs.

Last year, at a Canadian conference on the ethics of care for children with disabilities, we heard that about 20 per cent of the pediatric population in the U.S. generates about 80 per cent of its health-care bill.

It's not hard to see why people fear that the drive to cut costs plus research and media stories that paint a gloomy picture for families may make kids with complex disabilities vulnerable.

My friend noted there will be growing pressure on women to terminate when a diagnosis is made prenatally -- to save money and "protect" the family. The bioethicist Margaret Somerville wrote last year about a plan to make Denmark "Down syndrome-free" by 2030 by promoting abortions.

The focus on hardships in research and the media also affects families raising kids with disabilities. When you hear you're at increased risk for depression, anxiety, and, in the case of autism, divorce, and you read some of the literature about siblings, it's hard not to question yourself. Am I falling apart? Are my other children being damaged? Can I handle this? It's kind of a set-up for failure.

But you can't show any vulnerability. You're constantly fighting the stereotypes, trying to prove that really your child is valuable and really you aren't a complete mess as a parent or partner.

Parents of kids with disabilities want research because we’re told that we need evidence to influence policies on supports and funding. The reason all of the academics are in children’s rehab is because they want to make things better for families.

But do we have specific examples locally or elsewhere where services were put in place as a direct result of study findings -- as a way to mitigate stresses?

I can't think of an example in the time I've been raising Ben. Maybe one will come to me.

My friend was suggesting that we need more studies showing the value that disabled children bring to their families and communities.

There are studies, like this recent one in Child, Care and Development called Parent views of the positive contributions of elementary and high school-aged children with autism spectrum disorders and Down syndrome (pages 817–828) by Holland Bloorview researcher Gillian King.

As King writes in the study:

The findings should guard against the inaccurate assumption that there are no positive benefits in raising a child with a chronic disability, or that families experience unrelenting challenges and stresses. Parents may find it useful to know that other parents report many benefits, and the findings may reduce their uncertainty and fear regarding the journey ahead. The information can assist new parents to realize that benefits and enrichments will accompany the hardships, thereby providing a sense of hope. On a societal level, the present findings may encourage community members to view children with disabilities in a balanced light, not simply as a burden.

But do studies like this get any play in the media? I don't think so. Typically the media is looking for conflict or drama or even just simplicity. They don't do complexity and ambiguity so well. And that's what life is like raising kids with disabilities. It's full of beauty and joy and pain and challenge.

So how do you think we should be telling our stories? How can we create a climate where the public supports better services for families of children with disabilities?

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Girl with mental disability to receive transplant after all

A child who was disqualified from a kidney transplant because of her intellectual disability will receive the procedure, with her mother acting as donor, according to the blog Babble.

Chrissy Rivera, mom to Amelia Rivera, 4 (left), writes that her daughter has been approved for the surgery. Earlier this year, over 50,000 people signed a petition at change.org asking the Children's Hospital of Philadelphia to reconsider its decision to deny Amelia a transplant.

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Flippity flop

This is a piece I wrote four years ago about Ben's unusual ears and the plastic surgery to correct them that wasn't successful. I was reminded of it because last week I attended a Grand Rounds by Jennifer Johannesen, author of No Ordinary Boy, in which she spoke about how challenging it is for parents of children with disabilities to make good medical decisions. That statistics, the assurances of specialists -- which in our case often came in the form of "If this was my child, I would pursue it" -- can't take the place of careful inner enquiry on the part of parents to understand 'why' they're considering the intervention. Who is the surgery being done for? What might the child choose? If gains will just be incremental, does it justify the pain of the procedure and rehab? We're often not prodded to look at the bigger picture in terms of how this surgery fits with everything else going on in our child's and family's life. And how may we feel if the outcome isn't what we hoped?

Flippity flop
By Louise Kinross

"The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart." Helen Keller

It stands out from his head. It is cupped, missing the typical indentations and folds, with a bit of extra skin at the top. It has been called a deformity, a lop ear – named after the distinctly floppy ears of the lop rabbit. It is my son Ben's right ear, and it was one of a handful of facial anomalies that caught the attention of the midwife who delivered him.

That impossible-to-ignore ear, which vigorously resisted surgical attempts to tuck it back at the head, represents my own struggle as a mother of a child who looks different.

My child stands out. My child doesn't fit in. My child, by some, is considered deformed and ugly.

Ears. I had never given them a passing glance. Who did?

But this particular ear has led me to think long and hard about beauty. What is it? Is it an objective standard? Is it a certain facial symmetry, as suggested by evolutionary theory, which helps us identify people with good genes and exclude others? Can it be altered by the perceptions of the one viewing, or by the personality or spirit of the one being viewed? Is it subjective and fluid, based on characteristics that bring delight to a particular individual? How is it possible for us to see beauty in people deemed ugly by others? Why can our perception of beauty in a person change over time? How do people who are blind detect beauty in others?

Fourteen years ago, as I bubbled with glee at the birth of my first child, I had never had to consider these things. I saw a blurry little body with a mohawk-like tuft of wet hair being whisked away to be suctioned and waited for them to bring him to me.

But before I could hold him for the first time, the midwife returned and put her hand on my arm. "He has some unusual features," she said.

When he was finally passed to me, wrapped up in a blanket with a little stocking on his head, he did look different: his face was swollen, his nose a bit squashed, his chin was retracted and his ears stood out, one smaller than the other and fully cupped. His lips were almost non-existent.

I was concerned, but I wasn't panicked. My body was tingling with joy, endorphins coursing through it like the wind shaking the leaves of a poplar tree.

The hospital pediatrician arrived, unswaddled Ben and looked at him disapprovingly. "He has anti-mongoloid eyes, low-set ears and a bit of a hare lip," he said. He was obviously annoyed at being called out at that time of night and he didn't like what he saw. He said our son had "something like a cleft palate" and muttered under his breath: "the timing wasn't right."

An earlier amniocentesis on Ben had come back normal, so it was a surprise when the doctor said Ben had a constellation of symptoms that looked like a chromosome problem. At exactly one-hour-old, the doctor said these were soft signs for mental retardation, though he didn't know what he was dealing with.

We returned home with Ben in a haze of shock and a black hole of fear.

What did Ben's appearance mean? Would he be mentally retarded as the doctor intimated? How would others react to him? What would we tell them? How do I control what others think (in the early days I naively thought I could)?

"Couldn't we still be a happy family?" I asked my husband on day three.

On day four we saw a geneticist. She said Ben had a greater than 50 per cent chance of having a rare genetic condition associated with "abnormal facies."

But I had already started to see him differently. Outside of the clinical setting and scrutiny, my boy was growing beautiful before my very eyes. Here's how I described it:

2 weeks and a day
You have very delicate features – beautiful blue eyes with extravagantly long lashes, well-defined and delicate eyebrows, a round face with plump cheeks and tiny little lips. You have very light, fair skin.

3 months
You are becoming more beautiful every day. Your eyes are drop-dead gorgeous – big big, blue, long, long lashes.

5 months
Your face has changed a lot. Your eyebrows are growing in just like your Dad's – very thick. You have the most gorgeous smile – an all-out, ear-to-ear grin with dimples. You are very masculine-looking. Your body is a miniature of your Dad's.

6 months
It seems like a miracle that you are here. I like to sit and wonder at you – where you came from, how you came to us, how you are so perfectly formed.

How was it possible that I could view Ben as "perfectly formed" when medical experts described his face as "a complex picture with multiple congenital anomalies?"

I have come to the conclusion that beauty is something we choose to see.

When I was immersed in the everyday tasks of loving and caring for Ben, he was so much more than his unusual features: he was a cuddly ball of heart, giggles, interests and charms, whose chest rose and fell at precisely twice the rate of mine.

When I gazed into Ben's eyes it was like looking into a complete world. Ben mirrored back my joy and acceptance. In each others eyes, we were whole. In each other's eyes, we were enough.

And so it was that I could be emotionally broadsided when, instead of delighting in my sweet prince of a boy, others placed his so-called defects front and centre.

When Ben was almost a year he was diagnosed with torticollis; the muscles had developed too strongly on one side of his neck, causing him to sit with his head in a perpetual tilt. As we introduced ourselves to the therapist assessing him, I explained that Ben had a rare genetic condition. "I can SEE that," she chortled.

Ten days later, as Ben lay on an examining table charming a handful of medical students, the surgeon who was to bring down his testicles pranced into the room and demanded angrily: "What is WRONG with his head?"

Medical records show that emergency staff often noted Ben's facial appearance before his pressing medical problems. When he arrived by ambulance with bronchiolitis he was the "settled baby with unusual facies." A trip back to emergency with breathing problems two weeks later yielded this description: "Very unusual-looking baby who is active and happy."

Specialists who were consulted on other parts of Ben's body couldn’t seem to resist documenting that he had "dysmorphic" – malformed, misshapen or underdeveloped – features. I remember the first time I raced to the dictionary to look the word up, heart thumping at this new and horrible name that had been ascribed to my son. My sister-in-law, a physician, explained that doctors had a code name for kids like Ben: FLK or "funny-looking kid."

When we wrote my uncle about Ben's syndrome he wrote back: "We could see in the photo that something wasn't right."

The genetics counsellor assured me that I had every chance of having a "perfect" baby next time.

The implication that my son was imperfect, flawed, deformed could send me reeling with rage and grief for days.

After opening my uncle's letter, I phoned my friend Candace. I asked her a question I had not dared verbalize – except to my husband – for over a year: "Does Ben look different to you?" I didn't want an honest answer, but this time she gave it to me: "He doesn't look different to me because I'm used to him, but he probably looks different to other people."

I hung up the phone in a fit of sobs. I had floated on the illusion that Ben's differences were subtle and perhaps not noticeable to others. But more than that, I had simply stopped seeing them.

Our pediatrician had always been exuberantly positive about Ben – thank goodness. He even made comments about how Ben's facial features had normalized since he saw him at a few days old. Many friends, trying to be diplomatic and supportive, said they didn't notice anything. Of course I slurped those comments in like a draught of cold beer on a hot day and they reinforced my way of seeing Ben.

In my eyes his differences dissolved because I saw his face and being as a whole. But in others' eyes the odd features superseded the boy. In their eyes he was different, an oddity, something "wrong."

Now when I was out in the world, I would suddenly see this boy with the syndrome, the boy whose every feature had been scrutinized and found lacking. It was like I'd been fitted with a new pair of glasses: instead of bringing into focus his merry, dimpled-grin and piercingly beautiful eyes, all I could see were the stark clinical anomalies described in the medical texts: large bulbous nose; downslanted eyes, long philtrum, receeding chin, thin lips, sparse hair, outstanding ears. This new child was a stranger to me.

I began to fixate on the symmetry of normal faces – a certain space between the eyes, and between the nose and the mouth. Ears that were mirrors of each other, tucked tight against the head and identically placed under the short, little-boy hair cut that was so popular at the time.

Sometimes I would catch myself looking at other children's features and just longing for the same for Ben. "I hate these feelings," I wrote. "It isn't so much that I want this for Ben (that I can't accept him for how he is) but my fears that without a normal or conventional appearance others will not accept him and love him." Sometimes I felt bitter. Sometimes I would take photos of Ben's face and hold them upside down to examine the defects more objectively.

Strangers at the park attributed Ben's facial features and decreased facial movement to a negative mood. "Is he mad?" they would say, looking into the wagon at my passenger. "Is he always like that?"

"No, he's not mad!"

One day, while Ben played at the sandbox, a toddler came, stood in front of him and began to chant: "monkey man, monkey man."

"He wasn't being mean, just factual," I wrote. "I was not in one of those educational moods, and didn't say anything. The child seemed too young to understand an explanation and I didn't feel like saying: 'Yes, Ben's ears do look like a monkey's.' Doesn't this become comical or sad after a while?"

I didn't have experience with people who looked different growing up, yet as a child the question of how appearance could predict a life of happiness or sorrow puzzled me. "What would you do if you fell in love with Frankenstein?" I asked my best friend, Cathy. "I wouldn't fall in love with Frankenstein," Cathy said as she bounced back from a handstand on the street curb.

"But what if you DID?"

I can recall a moment of disturbing recognition when I looked at some photos I had taken of Ben as a newborn, but a couple of years later. I could now see the differences in a way I had not been able to at the time.

Something similar happened when I sat behind Ben at the hairdresser. The mirrors didn't correct his differences like my eyes did – they left them naked and punctuated.

While I would gladly have traded places with Ben for the 15 surgeries he endured (his ear surgery the only cosmetic one), I didn't know if I would have the courage to be so strikingly different in a world that places such value on appearance and conformity.

Over time, we learned that some of the features we had loved as Ben's – such as his extraordinarily long eyelashes and bushy eyebrows – were part of the syndrome.

I had read about parents of children with Down syndrome who had their slightly upturned eyes "corrected" with plastic surgery. This felt like a horribly intrusive and wrong intervention. Why put the child under the knife in order to fit arbitrary social norms? But I could understand why a parent would be led down that path. Down syndrome is so common that the facial features associated with it are an immediate marker of stigma.

One of Ben's first caregivers – a young Polish woman – was horrified when I said we'd considered getting Ben's ears pinned back when he was older. "His ears let people know there's something different," Margaret said.

"That's exactly what's so painful and unjust," I said. "No one wants their child judged in a split second based on appearance."

Ben's ears had always been most remarkable and since he was born we'd been told there was a simple operation called an otoplasty to pin them back.

We visited a plastic surgeon at a renowned children's hospital to find out more.

Dr. S was a young man with Hollywood looks followed by a small entourage of plastic-surgery students. He was kind and friendly and took his time looking intently at Ben's face.

Naively, I expected him to see what I saw. How could Dr. S see anything I hadn't already seen in my boy, who was now 3?

But he did.

"Ben could benefit from a bit of cartilage to create a tip at the end of his nose, which is somewhat flat," he said. "This can easily be done when he has the ear surgery." I had not seen the flatness of his nose – except in the minutes following his birth, when he had the typical squashed newborn look.

Pinning back his ears was one thing, but I couldn't fathom allowing a surgeon to cut into my son's face.

The volume of his cheeks is asymmetrical, Dr. S continued. I couldn't see the unequal shape of his cheeks so Dr. S tried to point it out to me. Was I insane? Why was I not able to see these things?

In addition, my boy's face wasn't as animated as usual due to low muscle tone – his smile not as broad as normal. I had always thought of his smile as one of his most beautiful attributes.

I couldn't reconcile the beauty I saw in Ben – and the delight he brought me – with his medical picture.

We left the appointment with a referral to Dr. W, the surgeon who did ear work.

I struggled with whether we should pursue the otoplasty. I hated that my son would undergo surgery in large part to make other people feel more comfortable. But by this time, Ben had been diagnosed with a whole collection of physical and learning disabilities related to his syndrome. When I asked Ben, who was unable to speak, if the kids ever teased him about his ears, he hit "yes" on his voice-output device. And when I asked if he thought it was a good idea to have the operation to fix his ears, he again hit "yes." Dr. S said they liked to do facial surgeries before the kids entered kindergarten – to "max out" their appearance and minimize social exclusion and teasing. In addition, there was now a strong functional impetus: Ben needed hearing aids and because his ears flopped forward, the behind-the-ear aids constantly waved back and forth, creating a disturbing ringing in his ears.

I was desperate to even the playing field for my boy and remove even one of the many strikes against him.

Other than telling us that Ben was a good candidate for the ear reconstruction, Dr. W didn't tell us what to expect. I don't know why I didn't ask. My understanding of plastic surgery was limited to episodes of Extreme Makeover. I assumed Ben's ears would be made symmetrical, tucked back at his head and equivalent in height. Like other people's ears, I assumed they would look "the same."

Ben emerged from the operation with his new ears bound in layers of white bandages. Dr. W said the procedure had gone well and we were elated. My only concern was the hot, itchy bandages, which Ben was supposed to wear for a couple of weeks.

Ben was highly sensitive to touch, so to deter him from ripping off the head dressing, I purchased some Teletubby hats that came down over his ears and snapped at the chin.

This lasted for about a week. One day I left Ben watching a video and when I came back a few minutes later bandages were flying through the air. My curiosity got the better of me and I allowed him to unwrap the last couple of rounds.

I was crushed. While his ears sat back closer to his head, they were still asymmetrical and very different in size and appearance.

I squinted and reopened my eyes a couple of times. Was I not seeing properly?

I expected two ears that looked the same – the birthright of most children. What had we done? I wondered. Why had we put him through this?

We went back to the hospital a month later and a nurse took out the stitches. A medical student came in, took one look at Ben and said: "I guess you're here about surgery to correct his ears?" I don't remember what Dr. W said. It was obvious that the student had given us an unsanitized assessment.

In the ensuing months, despite religiously covering them as we were directed, Ben's ears would gradually creep forward until they were again protruding significantly. We went back to see Dr. W. He had been featured in People magazine as the 'Smile doctor' because he was an expert in surgery that enabled kids with Moebius syndrome – a condition that caused weak or paralyzed facial muscles – to make their first smiles. We were surprised that he hadn’t been able to work a similar miracle with Ben's ears.

Dr. W said that he hadn't taken enough cartilage out, and that cartilage had "memory" – it always returned to its original position. He'd been worried about Ben's ability to wear hearing aids if he took more cartilage out. He wasn't sure how to make things better and referred us to Dr. F, a surgeon who specialized in constructing ears in children born without them.

Dr. F was surprisingly cautious. "He'll look different," he said, assessing the impact of additional surgery. "But he won't necessarily look better." How had we moved from a simple, quick-fix ear operation to this sobering statement?

As a parent, I felt duped. Why had the otoplasty repeatedly been explained to us as a simple procedure that would correct Ben's ears? Why was there a steady barrage of media stories recounting success with much more complicated and extensive plastic surgeries?

Dr. F said it was because Ben's ear structures weren't normal to begin with. If you have a normal body structure, he said, it's possible to enhance it – which often means making it bigger or smaller. But it was another kettle of fish when you didn't have the normal structure to work with. In other words, the people who most needed plastic surgery were the ones least likely to benefit from it.

"Ben doesn't seem to be particularly bothered about his ears," Dr. F said.

Was it because Ben had an intellectual disability that he didn't think it mattered? Or was it really that challenging technically? I'll always wonder. A quick Internet search for “lop-ear deformity" produced numerous plastic-surgery sites with impressive before and after pictures.

It grates on me that Ben's ear operation wasn't successful. We were trying to do something relatively minor to help Ben blend in just a little better. We knew he would always stick out with his short stature, developmental disability and inability to speak, but at least his unusual ears wouldn't draw attention away from his face, which in my eyes was beautiful.

Perhaps I should have consulted Ben's sister Lucy before deciding on the ear surgery.

"I just love Ben's big ear," she said spontaneously the other day, while sitting beside him at dinner.

Wow, I thought. Ben had always been a given for Lucy, who was born when he was a toddler. I had never heard her comment on his appearance.

I assumed she was talking about Ben's cupped ear – the one that is the most protruding, the most noticeable, and which most resisted the surgeon's handiwork – rebounding vigorously from attempts to refashion it flat against his head.

"No, I mean his taller ear," she said. His taller ear? How could his less-affected ear be called his "big ear?" Apparently Lucy, now 12, saw something completely different from me when she looked at Ben.

"Flippety flop, flippety flop," Lucy said lightly, acknowledging both the unusual nature of her brother's rabbit-like ears – and her complete acceptance of them.

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I say 'gobbledygook!'

I know nothing about philosophy in the academic sense.

And, after reading this paper published in the Journal of Medical Ethics, I have no interest in knowing anything about it.

In After-birth abortion: Why should the baby live? a philosopher and an ethicist argue that killing newborns – before they have neurological self-awareness – is ethical for children with disabilities, because it's assumed they would be an unbearable burden to their families and society. They also argue that infanticide is ethical for a healthy baby with no disabilities, if that baby might compromise the psychological, social or economic wellbeing of parents, siblings and society.

In a nutshell, Alberto Giubilini and Francesca Minerva argue that if a newborn is disabled, not wanted by his or her mother or too expensive, it's ethical for doctors to kill the baby.

In their article, the academics attribute the right to life only to individuals who can appreciate their existence and have ‘aims’ or dreams for the future, so that depriving the person of that life would be experienced as a loss. If individuals can’t value their life and plan for the future, because their brains are in the newborn state, or because they have a disability, the philosophers categorize them as non-persons who would not be harmed if killed.

“Merely being human is not in itself a reason for ascribing someone a right to life,” is how they so eloquently put it.

The philosopher/ethicist duo say that killing newborns who have severe mental and/or physical disabilities is ethical if the parents would have aborted the child in advance – if only they had the knowledge.

An example given is Treacher Collins syndrome, a rare genetic condition that Giubilini and Minerva describe as causing ‘facial deformity’ and physiological ‘failures,’ including potentially life-threatening respiratory problems.

Hmmmmmm. I thought. I remembered the name Treacher Collins because when my son was a toddler we visited an ear-nose-and-throat specialist at a world-renowned children's hospital who mentioned the syndrome in passing, noting that some of the facial differences were similar to those seen in my son. In fact, when telling us about Treacher Collins, the ENT said that Sylvester Stallone had the condition, and that while people with Treacher Collins had facial differences that required reconstructive surgery, they were intact intellectually and led full lives.

That doesn't seem to line up with the journal article's description of 'physiological failures' and life-threatening respiratory problems.

I did a quick search online and came across this blog by a young woman with Treacher Collins who is a physician in internal medicine, pediatrics and sleep medicine. She is also married and from the looks of the blog, loves her life.

Guibilini and Minerva note that people with Treacher Collins have typical intelligence so they would be aware of how ‘different’ they are and of all of their problems (seeming to imply that this would make death a better option).

They also tell us that 'many parents' would choose to have an abortion if they found out their child had Treacher Collins prenatally (not sure how they produce evidence of this claim, since it is not a standard syndrome tested for).

It seems to me that our philosopher and ethicist were looking for a syndrome that's not part of the regular prenatal testing battery to give an example of a situation in which parents don't have the option of aborting because they don't know of the diagnosis. Unfortunately, they didn't take much time to actually research Treacher Collins or speak to people living with it.

They lament the fact that in 18 registeries in Europe between 2005 and 2009, 'only' 64 per cent of ‘Down-syndrome cases’ (remember, we’re not talking people here), were detected prenatally, and that 1,700 babies with Down syndrome were born to parents who learned of the diagnosis at birth. For some reason, the philosophers don’t make the leap of understanding to consider that perhaps the parents of those 1,700 babies chose not to have prenatal testing because they decided to carry a child to term whether the child had Down syndrome or not.

They end this section with this bizarre statement: “Once these children are born, there is no choice for the parents but to keep the child, which sometimes is exactly what they would not have done if the disease had been diagnosed before birth.”

In this statement I can hear my 13-year-old son whining "It's not fair," and myself responding, "There are lots of things in life that aren't fair. But that's life."

Hello! Who said control over our circumstances is attainable in this life? Coming to grips with our vulnerability is part of the growing-up process which seems to have been lost on these academics. How would these philosophers ‘solve’ the problem of our mortality? Because I am sure there are many people who might not choose to die either.

But back to the article.

Giubilini and Minerva note that euthanasia in infants has been proposed by philosophers for children with severe abnormalities who meet two conditions: their lives are not worth living (they don’t define this – although we can assume from earlier comments that they equate an unworthy life with intellectual OR physical impairment that limits a person’s ability to envision or achieve their aims or dreams). The other condition is that they are experiencing unbearable suffering.

They tell us it is reasonable to predict that living with a severe condition is against the best interest of the newborn. They don’t say on what they base this prediction, but it’s interesting to note that while economists analyze quality-of-life years using models that assume low quality of life for people with chronic illness and disability, large-scale studies of self-reported satisfaction in people with disabilities paint a different picture.

Dr. Chris Feudtner, a pediatrician and director of the department of medical ethics at the Children's Hospital of Philadelphia went to great pains to describe this in a talk he gave at the Montreal Children's Hospital last year.

But our philosophers were not listening.

The article is full of contradictions -- on the one hand mentioning studies that find people with severe disabilities are happy, on the other, creating an image of the same people suffering unbearably.

Which one is it?

 They argue that the interests of ‘real people’ – who they define as parents, siblings and society at large – come before those of the newborn, who is a non-person, whether disabled or not. In fact, they suggest the term ‘after-birth abortion’ be used, rather than infanticide, because they compare the newborn to a fetus rather than a child.

“Actual people’s wellbeing could be threatened by the new (even if healthy) child requiring energy, money and care which the family might happen to be in short supply of,” they write.

And: “If a disease has not been detected during the pregnancy, if something went wrong during the delivery, or if economical, social or psychological circumstances change such that taking care of the offspring becomes an unbearable burden on someone, then people should be given the choice of not being forced to do something they can’t afford.” Since they believe the newborn does not yet exist as a person, they perceive the newborn as expendable.

Can't you hear that voice of my 13-year-old: "Why do I have to? It's not fair!"

Guibilini and Minerva even go so far as to say that a healthy newborn could ethically be killed rather than being placed for adoption because the idea of adoption might be more psychologically distressing to the mother.

The killing of disabled newborns would take place within a few days of the birth, they say, which they believe is enough time for the doctors to detect abnormalities. Further, in the case where a child is healthy, the killing can take place outside of any time threshhold as long as neurological assessments determine the child is not self-aware.

Minerva is quoted in the Daily Mail as saying: "This is not a proposal for law. This is pure academic discussion.”

The picture that runs with the piece shows a young woman (20-something?) who was formerly at Oxford and is now at the University of Melbourne.

Perhaps Minerva would like to consider the psychological 'harm' done to the wellbeing of 'real' families like ours who have to read her drivel? We can only hope that in the next few years she gains some life experience, is humbled and comes to her senses.

The editors of the Journal of Medical Ethics defended publishing the article in the name of intellectual freedom. I'm more interested in intellectual rigour.

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News on Amelia Rivera case

The Wolfhirschhorn.org website has posted an update on the Amelia (Mia) Rivera case on its Facebook page. It includes the following. Of course this is one account -- that of Wolfhirschhorn.org representatives and the Riveras. It is good to hear that the family and hospital are actively working together. Louise

Over the weekend, a meeting took place between a number of the key leaders of the Children's Hospital of Philadelphia, the Riveras and wolfhirschhorn.org. The purpose of the meeting was to get an understanding of the chain of events that led to the Brick Walls posting. The meeting lasted a little over 90 minutes and the Riveras had an opportunity to tell their side of the story and the related concerns about Mia's needs and how CHOP handled the situation. CHOP agreed that the system is broken and that they are taking steps to fix the process. In addition to addressing Mia and the next steps with her transplant discussions, a few suggestions were made to CHOP about their involvement in a more macro-view of awareness around transplant rights for the disabled, and public and medical community education around the "mentally-retarded" phrase. CHOP agreed to follow up and communicate their action items by the end of this week.

Mia and the Riveras are planning a visit to CHOP in the near future to determine CHOP's role in her transplant and her ongoing medical care. Once that meeting takes place, we will issue a statement on the status of Mia, her care, and CHOP's involvement moving forward.

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The transplant debate

FINALLY -- major news outlets have written about whether a New Jersey child who has a genetic condition and intellectual disability should be denied a kidney transplant. The blogosphere has been abuzz with opinions by parents of children with special needs over the last couple of days and over 38,000 people have signed a petition asking the Children's Hospital of Philadelphia (CHOP) to reverse its decision.

Today in the Huffington Post, Parentlode blogger Lisa Belkin argues that Amelia Rivera (left) should not be eligible for a transplant. And in a companion piece, Susan Senator, author of Making Peace with Autism, argues that she should.

Check out this interview with the family on NBC.

You can read Amelia's mother's account of a conversation she had with a transplant doctor at CHOP about Amelia's eligibility. And you can read a number of responses CHOP has posted about its transplant criteria on its Facebook page.

You may also be interested to read these recent BLOOM posts about an ethics conference at the Montreal Children's Hospital which looked at how cultural devaluing of children with disabilities plays out in their care:  The disability paradox; Costs, quality-of-life ratings puts complex kids' care at risk; Burden of kids not whole picture, ethicist says; and A fate worse than death.

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