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hopeless case, we ought to take into consideration whether or not the parents really want to sit by while treatment is withdrawn and while there is a prolonged period of time until eventually the newborn expires.”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release) that supports giving a lethal injection to newborns with serious birth defects whose tube feeding had been withdrawn, because watching them die “causes severe suffering for the parents.”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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Why blame Mom?

Historically it's been mothers who are blamed when children are born with disabilities. In earlier times we were thought to have sinned, while today the belief that women can prevent birth defects, by what we do or don't do during pregnancy, is rampant. And so is its unfortunate corollary: that women who give birth to a child with a disability caused it.

Public health messages that suggest mothers can prevent most defects by taking care of themselves during pregnancy abound.

According to the U.S Department of Health and Human Services website, a healthy baby is the outcome of these five steps:

Five Ways To Have A Healthy Pregnancy and Baby

1. See a doctor or other health-care provider from the start of your pregnancy.

2. Don't drink alcohol, smoke cigarettes or take drugs.

3. Eat healthy foods, including fruits, vegetables, low-fat milk, eggs, cheese and grains.

4. Take good care of your health and exercise sensibly.

5. Have your baby checked by a doctor or health-care provider right after birth and throughout childhood.

More current information (including the importance of folic acid and risks associated with obesity and diabetes) is listed at the Centers for Disease Prevention and Control. 

Yet we know from the March of Dimes that the cause of most birth defects—up to 70 per cent—is unknown. It follows that in most cases a woman can't control whether her baby is born with or without a disability (unless she aborts a child diagnosed prenatally). I bet you most mothers of children with disabilities followed the five tips above to the letter. 

So why are we led to believe our baby's health rests solely in our hands?

Consider this Healthy Babies Are Worth The Wait t-shirt I found as part of the Prematurity Campaign on the March of Dimes website.

What is the meaning of this, I thought? Women don't choose to have premature babies because they're impatient. Most preterm labour, in fact, can't be prevented. "Our analysis shows that the current potential for preterm birth prevention is shockingly small," said Dr. Joy Lawn of Save the Children, who led the first multi-country study looking at the causes of premature births and how to reduce them, published in The Lancet last November. So why suggest that women can control premature births?

Apparently the Healthy Babies Are Worth The Wait initiative targets women who consider scheduling a C-section before 39 weeks. "If possible, it's best to stay pregnant for at least 39 weeks," says the article.

This campaign won't touch the rate of premature births, which declined in only three countries of 65 from 1990 to 2010 according to The Lancet study. That's because asking your obstetrician for an early C-section isn't a major contributing factor.

But how will a mom of a preemie with disabilities feel when she reads that t-shirt message? What if a sibling of the child with disability reads the shirt and asks Mom why she didn't wait?

Yesterday I read about a new March of Dimes book called Healthy Mom, Healthy Baby in this New York Times' article: Too Many Pills in Pregnancy.

According to the Amazon description, Healthy Mom, Healthy Baby empowers "mothers-to-be... with more information and positive steps than have ever been available before to ensure both a healthy pregnancy and a healthy, happy newborn."

What?

If most causes of birth defects are unknown, "positive steps" taken in pregnancy can't guarantee a healthy baby.

The book is mentioned in an article in which the American Food and Drug Association estimates that at least 10 percent of birth defects result from medications taken during pregnancy. According to the article, a recent study shows inaccuracies in online information about which drugs are safe, which means women who choose the Internet over a doctor's consult may receive faulty advice.

That's critical information for women, and I can't imagine anyone arguing that we shouldn't carefully weigh the risks and benefits of medication use with informed doctors.

But don't suggest that healthy moms who do all the right things during pregnancy have healthy babies!

Titles like Healthy Mom, Healthy Baby feed this magical thinking. And they reinforce the popular fallacy that mothers of disabled children did something wrong to cause their child's condition.

In a recent piece called Pregnancy and blame on Conversations, an Australian news site, author Kathryn Knight writes about how simplistic public health messages about birth-defect prevention diffuse into the culture. We all know parents who've been been the recipient—at school or on the playground—of judgemental questions like: What went wrong? Didn't you get the test? Why didn't you terminate?

And that line of questioning isn't limited to an uninformed public.

I have a son with a rare genetic condition. The way a researcher described it, when my chromosome 8—let's call it a green ribbon—exchanged parts with my husband's chromosome 8, a red ribbon, to produce a striped red-and-green ribbon, a minute piece was left out. That random error at conception caused his disabilities.

Yet to this day (he's 18) I'm asked by health providers for a detailed pregnancy and delivery history. "But the genetic condition occurred at conception," I will implore, as the 20 questions about my pregnancy are trotted out. "It had ALREADY happened!"

A blog in Three To Be's Parent Advocacy Link yesterday had a similar theme: 

"When Maclain was born, I blamed myself very heavily for a long time," writes Brenda Ferland Agnew. "It was my fault that one of my twins had died. I should have known sooner that something was wrong. I should have gotten to the hospital sooner. If I had done things differently both of my babies would have survived, and Maclain wouldn’t have been born so early. I could have prevented his brain damage if I had done something more. I carried this with me everywhere I went, with every move I made. It ate away at me, and kept me awake at night...

"A year and a half after his birth, we received confirmation that Maclain’s brain damage was caused by a condition known as Kernicterus. He was not treated for jaundice, and this was what caused his cerebral palsy and his hearing loss. We had suspected it for a few months, and after a visit to our neurologist, we got a letter that ruled out his brain damage having been a result of any intrauterine insults, or because of the Twin to Twin Transfusion...

"I was so angry that I had been made to feel by all the medical professionals, that my son had disabilites because of something I had done wrong."

We have less control over a myriad of things that can happen to a fetus than books like Healthy Mom, Healthy Baby—or Five Ways To Have a Healthy Baby tip sheets—would have us believe.

Let's speak the truth about how much we don't know about the causes of childhood disability and, more importantly, how to prevent it. Let's tell the truth about how Healthy Mom can just as easily produce Unhealthy Baby, or Healthy Baby with a Disability (because disability is not necessarily synonymous with poor health!).

Every mom wants what's best for her baby. In most cases when congenital problems are found, it's not because of something we "did."

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'I don't remember when I realized I was different'

'I don't remember when I realized I was different'
By James Shea

I sat in the bleachers at the Dean Dome in Chapel Hill, N.C. last year. Erskine Bowles, the former president of the University of North Carolina and a presidential appointee to the National Commission on Fiscal Responsibility and Reform, gave the keynote address. I scanned the rafters and saw the multiple national championship banners.

“What a journey,” I thought to myself at age 40. “I have come so far.”

I was raised in a small farming community in Oregon and was born with one arm. I was in Chapel Hill for the annual North Carolina Press Association awards and surrounded by fellow newspaper professionals. I won first place in the “Best Breaking News” category and was at the event to receive the award. I had beat out dozens of other newspapers in the state and who knows how many reporters.

It was not my first. I have won a dozen writing awards. Some were as part of a team and others as an individual. I did this all as a disabled journalist, something that makes me proud.

The journey was not easy and required hard work and dedication. I had so many people along the way who doubted my abilities and even thought being disabled somehow made me stupid. Please! There is no relationship between my disability and my brain. I know that I am not the smartest person in the world, but I’m not dumb either. I have two bachelor’s degrees from the University of Oregon and survived 10 years in a dying profession – print journalism.

It didn’t start off so well. I barely graduated high school and have struggled with depression as an adult. I have screamed at the world, pissed at the cards I was dealt. But nothing will change my situation.

I am disabled, and I will be that way as long as God allows me to walk this earth.

I don’t remember when I realized that I was different. While I have one arm, the disability goes much deeper. My entire right shoulder never really formed in my mother’s womb. I have a small finger that protrudes from my partially formed shoulder. Anyone who looks at me sees my disability. It’s rather obvious. I see it in people’s eyes, especially young children. They stare at me in the grocery store or the park.

“Look mommy, that man has one arm,” the child often says.

It makes me feel uncomfortable even to this day, but I have come to terms with that. I will not hide from the world. I have a right to earn a living and find happiness just like anyone else. I just have to work a little harder.

I never really planned to be a journalist or a writer. It just happened. I did a few freelance articles after college and took a job at a small community newspaper in Colorado. I was not very good at first. I mostly covered city council and county commissioners. My editors were patient with me. They taught me better ways to tell a story and how to dig deeper into a subject. And through that process, I had to deal with the awkwardness of being a disabled journalist. But I adapted. I had to place my notepad on my knee, when others held it with their hand. I never let the odd looks and uncomfortable situations get in the way. I had a job to do.

When I was young, I told myself, “I’m normal.” This story worked until puberty. Then, my friends got girlfriends and kissed them for the first time. I know girls, especially teenage girls, had a problem with my disability. I understand. That didn’t make it easier. But my junior year in high school, I met a young woman who looked past my disability and dug herself deep into my heart. We dated throughout high school and are still friends today. As I got older, the dating became easier as women matured, and I became more confident in my own skin.

For my parents, it was hard. They saw my struggles and wanted to help.

As a reaction, they often sheltered me from the consequences of my actions. I did something dumb, and my parents, especially my mom, would make excuses. I went unpunished.

If I can give parents of a disabled child any advice, it’s this – don’t be over-protective. You need to be as hard on them as you are on any child. Yes, growing up with a disability is hard. I won't say it's not. But don’t make excuses. A child is a child. He or she makes bad choices, and they must understand those actions have consequences.

A couple of years ago, I wrote a memoir about my experiences as a disabled person and a dog who helped me through a tough period in my early 20s. I had several New York agents read the manuscript, but none chose to represent me. My friends who read the manuscript pressed me to find a home for the manuscript. I recently published the manuscript, Plucking Wolf Fur, as an ebook on Amazon. I want parents of disabled children to learn from my experiences. Life can be bad, you can make bad choices, but in the end you can find peace and your place in the world.

James Michael Shea is an award winning-journalist and is the author of Plucking Wolf Fur: A story of one arm, one dog, and an American family. He blogs about his book and media convergence at http://www.jamesmichaelshea.com/. He can be reached at jamesmichaelshea@gmail.com.

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