Ian Brown on The case for imperfection

The Boy in the Moon author Ian Brown gave a brilliant talk at Holland Bloorview last week. He captivated everyone. You must check out this short clip.

I am off for three weeks and one of the places I'm visiting is the L'Arche community that Ian speaks about in France.

My student Megan will be covering for me while I'm gone.

Happy summer! Louise

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Single parenting in the world of disability



Maria Niembro talks candidly about the challenges of raising her son Francesco, 7, as a single parent and offers practical advice for other parents flying 'solo.' Maria is a member of Holland Bloorview's family advisory. Thanks Maria!

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RARE gives voice to people with Down syndrome

 

Canadian playwright Judith Thompson’s RARE debuts on July 5 as part of the Toronto Fringe Festival. The play stars nine adult actors with Down syndrome. Through a montage of monologues, members of the ensemble tell their stories in their own words. While Judith helped to curate and fine-tune their work, the play was mostly written by its performers. BLOOM spoke with Judith about the production process, and what audiences can expect. Photo by John Gundy.

BLOOM: Describe how the play was written.

Judith Thompson: We basically start for weeks and weeks of rehearsals just sitting in a circle. I’ll say ‘Let’s talk about childhood memories.’ Everybody has a story. And I have to have a script assistant on a computer getting this down.

Sometimes I ask things like ‘If I feel like a wet street on a hot day, what do you feel like?’ Their answers have been amazingly creative. Nick felt like tall sexy grass. All their images are incredible. James felt like a diving eagle. They just came up with these themselves. It’s absolutely important to me that it’s their words. They might give me a few and I’ll keep asking until I get one that really reflects who I think they are.

BLOOM: What have been the joys and challenges of working on this project?

Judith Thompson: The joys are daily because there’s so much good humour. There is, in (the Down syndrome) community, a greater emotional openness, I will say that. That is a difference that I see…They’ll give you a hug and say I love you. They’re open and out there.

We’ve been instructed to be closed in order to succeed in this society we’ve constructed. We can’t suddenly burst into tears; we have to shove it down. Even though members of the theatre community have more emotional access, the performers that I’ve met with Down syndrome – I think ‘Wow, you should lead theatre classes.’ But that same emotional availability though, if somebody’s upset, can cause problems. Somebody who doesn’t have Down syndrome may hold it in or hold a grudge, but in this community they just burst into tears right there and fall on the floor. That’s a challenge because we have to keep going with rehearsal. I never lower my expectations. We just have a hug, and we talk about it, and then we move on.

BLOOM: What are some of the things you’ve learned through this experience?

Judith Thompson: Before, I tended to just think ‘Oh, (people with Down syndrome) are God’s special angels,’ and painted them all as lovely and warm and sweet. I’ve learned to think ‘No, they’re as complicated and prickly and difficult and wonderful as you or me.’
There was a dynamic that had to shift. I was treating them unconsciously like a younger sibling or something. But I’m an adult and so are they… So they’re not cute, don’t condescend to them. They’re people of profound and complex thinking.

BLOOM: What are you hoping the performers will take out of this?

Judith Thompson: That they own it…and that they’re writers as well as performers. That’s why it was really important to me that it’s their words and they create it. Putting them in another show as performers is one thing. But they’re creating it. And so for them to have that agency I think is extraordinary for their confidence generally. They can actually make change and not be passive. So often people with disabilities are made unintentionally to feel passive. But they are making themselves visible. I’m just the guiding hand, and they are out there telling their stories to the world. No one is telling it for them.

BLOOM: Could you give me a couple of examples of what stories performers will be telling?

Judith Thompson: One of the performers talked about how his greatest wish is to have sex. He’s 22, he’s allowed to say that. And I’m not sanitizing anything that way. And nobody laughs. I mean yes, he’s a 22-year-old male, of course he does.

They also talk about the fact that about 97 per cent of parents, when they find out their baby is going to have Down syndrome, terminate the pregnancy … Krystal actually wrote a letter to pregnant women that she delivers on the stage that is so heart wrenching, and it’s basically saying ‘Keep your Down syndrome baby.’

They talk about their struggles. And they’re very much invested in their families. Some of the parents have said ‘Why is it such a serious play?’ And I’ve said ‘It’s every bit as funny as it is serious, but I’m not here to entertain.’ There’s enough of that around. There’s nothing wrong with entertainment, but that’s not what I do. Theatre has to hold a mirror up, it has to illuminate, it has to make what is invisible visible, and what is silenced, heard. And they are doing it, in their voices.

RARE tickets can be ordered online.

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Busted

What do you do if you and your partner disagree on how to handle an issue with your child?

Let's say it's an issue that rankles, so one day you bring it up at a meeting with a social worker you're seeing for your child. And the therapist pretty much sides with your partner and even suggests that it would be helpful for you to get therapy (which you've already had lots of). She asks you if you were to let go of the vigilant worrying you do for your son, what would be left? What would be underneath? And she suggests that maybe it would be grief or maybe it would be something else.

If you're me, you sit on it for a while and do nothing.

Then you ask a friend who's seen the same social worker for her child what she thinks. "You're talking to the wrong person if you think I'll talk you out of therapy," she says. "All I do is therapy!"

Then, because you're so stubborn, you convince your partner that a second therapist, a cognitive-behaviour therapist, should weigh in on the matter. You're pretty sure this therapist's opinion will be more in line with your own.

So off you go. The second therapist suggests that this is more to do with you, your relationship and parenting styles. She isn't willing to criticize your partner's approach. She feels the issue is something you together should keep an eye on, but at this point she isn't red-flagging it and she isn't supporting your version of how to handle it (that hubby follow your precise recommendations).

Which brings you all back to the point that maybe there was something to what therapist number one had to say about you. That maybe the 'problem' isn't outside you, but within you, something that you have to take a closer look at.

Meanwhile, hubby is sitting on the couch, fighting heavy eyelids to stay awake and focused on therapist number two. "She never got to the point," he says afterwards. "I didn't really understand why we were there."

Busted, you think.

I guess you can never have too much therapy.

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Mom backs real blended food for tube-fed tot

By Jennifer Han

My twins Andrew and Eleanor were 28-week preemies. Andrew came home from the hospital with three stomach surgeries under his belt and significant brain damage. The brain damage caused cerebral palsy and epilepsy, which put him at risk of aspirating and made feeding difficult.

At 21 months he had a fourth surgery to place a G-tube to ensure he was getting nutrition safely and in hopes of boosting his calories.

Andrew, I was told, could no longer eat real food. Instead, his diet would be a formula that was described as nutritionally complete, but which I discovered is made up of 53 per cent corn syrup.

The G-tube solved the problem of getting formula into Andrew, but it exacerbated his reflux and vomiting. Andrew spit up every ounce, retched, lost weight, never slept and stopped smiling. Instead of producing stools, he had green diarrhea once or twice a week. He was on the brink of total dehydration and doctors suggested more surgery: a J-tube, nissen-fundoplication or GJ-tube, but with the caveat that they might not work.

Then, while scouring the Internet for stories about children with severe reflux, I came across something called the blenderized diet.

In this diet, vegetables, fruits, grains and meats are blended in a super high-speed blender until they become liquid, then fed through the g-tube.

Families out in the blogosphere said that real food had a calming effect on their children’s stomachs and as a result, stayed down.

I had no idea that real food was a possibility with a G-tube!

This diet – which was never presented to us as an option by our medical team – has given us our boy back.

The blenderized diet isn’t new or radical. Feeding tubes have been around for decades and patients were once fed mostly blenderized food. In the 1970s commercial formula was introduced; hospitals embraced the convenience and never looked back.

I told our doctor and nutritionist that before we did any more surgery, I was going to try the blenderized diet. They weren’t happy. They said they had never had a patient go this route and that formula was best. With some reluctance, our medical team agreed to a trial.

The first week of the diet, Andrew did not spit up once. By day four, he was completely off formula and having nice bowel movements one to three times a day. He went from taking multiple 10- to 15-minute catnaps a day to a single one-to-three hour nap. He started sleeping 10 to 11 hours straight through the night with no feedings.

At his weigh-in two weeks after the start of the diet, he had lost a few ounces. I was disappointed, but knew that as the body adjusts from a mostly-sugar diet to real food, this was common.

Ever since, Andrew’s been gaining weight!

He may spit up once a week or so but it’s usually if he’s overtired or constipated.

Now that Andrew’s body is responding in a healthy way to real food, it’s clear that formula didn’t agree with him. We are bewildered and beyond pleased at how amazingly fast, drastic and profound the change has been. Not only is the blenderized diet treating Andrew’s severe reflux but it’s made him happier and healthier and prevented further surgery.

We know this diet isn’t for all children with severe GI problems. However, I believe medical staff should present it as a treatment option along with standard surgeries.

While the blenderized diet is a foreign idea to most North American hospitals,
there are a few – like Children’s Hospital of Philadelphia and Cincinnati Children’s – that recommend it. In fact, in a 2010 study by Cincinnati Children’s Hospital, 75 to 100 per cent of 33 children with failed nissen fundoplications who trialed the blenderized diet showed an immediate reduction of 50 per cent or more in reflux and vomiting.

For Andrew and our family, the blenderized diet has been life-saving.

Before beginning any change in your child’s diet, run it by your medical team, as it’s important that you have a supportive doctor and dietician to guide you.

Blenderized diet resources

Homemade Blended Formula Handbook by Marsha Dunn Klein

Ainsley Rae blog: great practical tips from a mom

Blended Food Resource Group

Facebook group for the blenderized diet

Andrew’s first blenderized recipe

This one comes out to about 34 calories per ounce. His Elecare formula is 30 calories per ounce. In the other recipes I’ve come up with, ratios for protein/grains/oils/veggies/fruits stay the same. I just swap different foods each time. His blends tend to be between 30 to 40 calories per ounce.

3 cups of roast chicken 700 calories
1 cup orange juice 100 calories
1 cup soy milk 100 calories
2 slices of whole wheat bread 200 calories
1 cup blueberries 70 calories
1/2 cup broccoli 40 calories
1 cup spinach 60 calories
1 tablespoon of olive oil 120 calories
1/3 cup apple sauce 60 calories
1/2 cup peas 60 calories
1/2 banana 50 calories
1 container pureed pear 45 calories

Total Calories: 1645

Read about Andrew and Eleanor and the latest edition to the Han family at The Early Birdies.

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How to write 'the whole truth'

Author, teacher and editor Kate Hopper has dedicated most of her creative energy to one thing: motherhood. The Minnesota mother has written extensively about the topic – the good sides and the bad – for years. Now, she wants to help others do the same. Kate teaches a class called Motherhood & Words, in which mothers learn to relay their experiences through creative non-fiction. This spring, Kate also released a book called Use Your Words: A Writing Guide for Mothers. BLOOM spoke with Kate about her new book, and the art of mother writing.

BLOOM: What can people expect to find in your book?

Kate Hopper: My goal was to really represent the diversity of mothering experiences. So culturally and racially, but also I wanted to have pieces about typical children next to a mother that’s talking about children with special needs. It expands the community…I think it makes parents who maybe don’t have a child who has special needs take a step back and be like ‘Oh, this is the same as what I’m doing,’ or ‘This is really different than what I’m doing,’ and it kind of allows them to gain an appreciation of each other in our singular communities.

BLOOM: What value does learning to write about a child have, particularly for parents of kids with disabilities?

Kate Hopper: Having a child with special needs …there’s a whole new set of issues that parents are dealing with: coming to terms with how the needs of their child are changing their life, and maybe other children’s lives. And so I think it’s really helps them be able to put things in perspective, and gives them a space to process both the really great parts about what this child can bring to their life, but also the hard parts.

Also, I think that it’s so important to be able to read through other people’s experiences so you don’t feel alone…For example, I have one student whose son had a rare genetic disorder. She was so scared when he was born that she wished he would die. She was so afraid of him. It’s really hard for someone to write that down and admit that they felt that. But she knew that admitting that would help another parent down the line. And that was so important for her I think.

BLOOM: So in a way, writing is therapeutic?

Kate Hopper: Yeah. I think it’s a space to reflect and slow down. Because I think we get into this mode –whether you’re dealing with typical children or not – where we’re always going, going, going. And when you can sit down and take that time to reflect on what you’re going through, you just gain a new perspective.

I see it really is helpful in terms of processing through the experience but also really appreciating what our children do bring to the world, and to our lives, and how that has changed us as well.

BLOOM: Your daughter was born premature. How did writing about that experience help you personally?

Kate Hopper: I actually felt like that’s when I became a writer. She’s a healthy eight-and- a-half-year old now, but it was a really traumatic few months in the hospital and a very lonely winter. I felt really desperate for words, to try to find my experience reflected.

I started to write when she was five months old. I went to the coffee shop near our house and began to get those words out on the page. And I just started to feel like the world was opening up again for me… Just getting words out on paper always makes me feel more connected to the world. I’m certain I have seen that with my students with children who have special needs, just getting their experiences out helps.

BLOOM: Do you have advice for parents who want to write about their kids but are feeling a bit stumped?

Kate Hopper: I always tell people to start with a moment they don’t want to forget, or a moment that really comes back to them again and again. So maybe that is the birth of their child. Or maybe it’s the moment of diagnosis for some people if their children have special needs. Go back to that moment and write it in as much detail as possible, using as many concrete sensory details as they can, and start getting into it little by little… Go moment by moment and let your discovery of it happen.

Don’t censor yourself, especially if you’re writing hard stuff. If you think ‘Oh God, I would never say that,’ or ‘What would people think of me?’ then you’re not really going to be true on the page.

BLOOM: Do you find that many of your students are parenting kids with disabilities?

Kate Hopper: Oh yes they are…I think one of those things that drives them to the class is the need to make sense of their experience and put it in a new perspective and look at their life in a different way.

BLOOM: And what kind of outcomes or feedback have you gotten from parents so far?

Kate Hopper: The biggest thing is being able to write the whole truth of their experience. It’s been transformative for so many parents to be able to say number one ‘This is valuable, my story is important,’ and also ‘How can this help other people?’ …I think that a lot of people feel like they have to make sense of those things and to talk about both the really beautiful parts of (parenting a child with a disability) and the hard parts.

Kate Hopper blogs at Motherhood & Words. Interview by Megan Jones.

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Off in a corner

A dozen Ontario children who use mobility devices such as wheelchairs or walkers mapped their movement so that researchers at the Bloorview Research Institute could assess the accessibility of their homes, schools and neighbourhoods. Tablet PCs with Camtasia software were used to sketch the layout of their classrooms and illustrate some of the barriers they face (see example in video). The researchers built on these findings by surveying about 600 school-aged Ontario children with mobility disabilities to identify barriers and possible solutions. Results will be published in the next year. 

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Getaways!

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An update on Kate!

You heard about Kate when her mother Julie Drury, above, wrote about a new complex care program at the Children's Hospital of Eastern Ontario (CHEO) that she was benefiting from. Here's an update on Kate from CHEO.

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What do you see?

Last month I gave a presentation to medical and research students in the Bloorview Research Institute called What do you see?

In a nutshell, it was about how Ben was seen medically vs. how I saw him, and how important the parent picture is for kids who can't communicate conventionally. I encouraged the students to keep their minds open and flexible and always be examining their stereotypes and preconceptions.

If you want to hear the presentation (sorry, no video available), click above.

Sharing the stage with me was No Ordinary Boy author Jennifer Johannesen, but I don't have her talk uploaded yet. 

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More about Pauline

A couple of weeks ago we ran an interview with Rick Guidotti of Positive Exposure. Rick – a photographer who used to shoot the world's top models for companies like L’Oreal and Yves Saint Laurent – now travels the globe photographing children with genetic differences. His mission? To “(change) our ideas of normal."

I went into Positives Exposure’s online gallery to choose a photo to run with the interview. Out of hundreds, one jumped out at me. It was of a girl in glasses and her expression conveyed spunk, grit and charm. I asked for this image but was initially sent a different one. I went back to ensure we got ‘our girl.’ It arrived with the name The Amazing Pauline!

We ran the blog and it was only after that I learned that Pauline (photo right) had died five years ago.

I asked her mom, Catherine, to tell us a bit more about her daughter.

Pauline Wells Burzio was full of life and mischief! She loved her friends, school, sports and singing in the church praise band. Living with 18p-, a genetic condition, she endured many surgeries. She died in 2007 at the age of 13 due to a brain bleed after heart surgery. She is survived by her family and three awesome brothers: Ashton, JB and August.

She's also survived by her first ‘best’ friend – Rebecca (photo left above). Says Catherine: "Our families met in 1999 at the Chromosome 18 Registry and Research Society's annual family conference. It was the first time both of our families attended and we hit it off from the start. Pauline was five years old and I think Rebecca was three, but they became fast friends. Rebecca still calls Pauline her first friend."

Pauline’s family lived in Virginia and Rebecca’s family lived in Maryland, so they split the two-and-a-half hour drive by meeting in the middle – for lunch or a weekend outing.

“We tried to visit face to face as often as we could,” Catherine says.

Rick sent me this photo of the pair. You'll notice that Pauline isn't wearing her glasses in this one.

Catherine still volunteers for the Chromosome 18 Registry and Research Society that brought them together. You can read more about Catherine and Pauline here.

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Silent Sunday

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Six degrees of separation

A weekend ago I walked into my regular Starbucks. A customer was talking to the barista and gestured to me. I couldn't figure out why. Had I done something odd? Did she know me?

Imagine my surprise when the barista said this woman, named Michelle, was paying for my coffee! She had attended our BLOOM speaker evening with author Amy Julia Becker and wanted to thank me.

We got to talking and Michelle told me about her awesome son Emerson, 4, above, who has a rare genetic deletion on chromosome 18. My son Ben has a genetic deletion on chromosome 8.

That Monday Michelle e-mailed me, identifying herself as the "Michelle from Starbucks."

This is a story about a trail of connections that never would have occurred without the Internet.

Michelle met me because she came to hear A Good and Perfect Gift author Amy Julia Becker at Holland Bloorview.

I connected with Amy Julia in 2010 by chance when I read an online comment she made on a New York Times blog about whether we should research a "cure" for Down syndrome. She wrote, in part, about her daughter Penny:

"It's hard to believe that she won't be able to solve problems or read literature. And yet it's easy to believe that she will rush to a friend, or even a stranger in need. Easy to believe she will bring joy and light and life. Can she live a full life without ever solving a quadratic equation? I'm pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I'm pretty sure I can't."

That comment resonated with me, and imagine my surprise when a few months later Amy Julia, who lives in New Jersey, posted a comment on BLOOM and I recognized her name.

Since then Amy Julia has written for BLOOM -- and written a book! -- and we've had a number of fascinating conversations about human value and what it means to live a good life.

Last month she was flying in to Toronto to do an interview about her book and came directly from the airport to speak to parents at Holland Bloorview -- including Michelle, who was able to speak one-on-one during the break.

Meanwhile, a couple of weeks ago, The Four Walls of My Freedom author Donna Thomson (also a recent BLOOM speaker!) posted about Positive Exposure, an amazing New York organization that promotes the beauty of children living with genetic differences. Donna linked to this Ted Talk by Rick Guidotti, the former fashion photographer who founded Positive Exposure and travels the world taking pictures of children with genetic syndromes.

I spoke to Liz Grossman, the group's program director. Liz's initial link to Positive Exposure was her 12-year-old daughter Talia, who has a syndrome called 18q-. Talia is now an avid blogger with an education program called PEARLS run by Positive Exposure. Youth with genetic anomalies blog about their lives and students in high school read their stories as part of a curriculum about genetic diversity.

My student Megan interviewed Liz and Rick for our upcoming BLOOM magazine.

When my Starbucks' friend Michelle mentioned that her son had a condition involving chromosome 18, it rang a bell. I remembered what Liz had told me about her daughter. In fact, it sounded like the same diagnosis.

So I asked Liz, who lives in New York, if Michelle could contact her. "Yes, please give her my email," she messaged back.

I passed Liz's contact information to Michelle and she wrote back: "Wow, I hope you enjoyed your coffee last week because it's clearly the best coffee I've ever purchased!"

The special-needs world is a small one, thanks to the Internet.

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Who's a burden? Who deserves help?


Sometimes I despair at our culture's narrow sense of what makes a person 'matter' or, as Tracey Chapman sang in Fast Car -- what allows a person to "be someone, be someone."

Are you your paycheque, your test scores, how well your body fits Western conceptions of beauty or athleticism or any other of a number of skills and attributes?

If you can't measure up (cause you're an infant or a senior or past your prime as an athlete or severely depressed or unemployed or disabled or terminally ill) does your value as a human being plummet?

This piece in the Huffington Post by my friend Ellen at Love that Max got me thinking: Are kids with special needs really a burden to society?

Ellen wrote about an acquaintance who has a son with Asperger's who made the following comment:

"If there are 10 kids with mild autism and one with profound autism, the money should go toward helping the 10 kids because they would be 'better candidates' for contributing to society."

I guess a similar argument could be made for educating only students with gifted IQs, since their brains can potentially plow back more into society than those of their average peers.

But abandoning that child with profound autism and his or her family will result in greater costs to society over time.

As Dr. Chris Feudtner, director of the department of medical ethics at the Children’s Hospital of Philadelphia, noted in a previous BLOOM piece: “Is medicine a one-on-one proposition or do we look at it from a societal perspective that includes people connected to the patient? If we cut respite care and a parent has to stay at home, do we count their lost wages as costs? If my child’s quality of life growing up makes me happier, do we count that? What are the ancillary benefits of having a child do better? There are instruments to measure family stress and depression. If a family receives social services, does their level of anxiety and depression drop?"

In the past religion kept alive the idea that every human life was sacred and had a fixed, immutable value. But since so many people have fallen away from religion, our worth has become variable and tied to what we do. That means that for all of us -- not just those with disabilities -- our value will rise and fall like a yoyo over our lifetime.

That is if we are allowed to live.

A bioethicist and philosopher in a recent peer-reviewed journal 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.

Because of the idea that a disability reduces a person, creating acceptance for people with disabilities often seems to involve insisting that people with disabilities are "the same" as everyone else -- instead of broadening our concept of human diversity.

It reminds me of parents who proclaim: "My child doesn't see colour, my child doesn't see race." Well we know that's patently untrue. But it's possible that children haven't yet adopted the stereotypes associated with skin colour.

In the same way, children see physical, intellectual, communication or social differences, but don't necessarily ascribe something negative to them.

At Noah's Dad, I felt uneasy when I read a blog recently titled How problem-solving is an indicator of intelligence for children with Down syndrome. Rather than expanding our understanding of intelligence from that of book intelligence and IQ, it seemed that the authors were trying to convince readers that their son has the same problem-solving abilities as his peers. And maybe he does. But what about the child with Down syndrome who doesn't? Is that child in any way less valuable?

Ellen says in her Huff Po piece that her son Max, 9, with cerebral palsy, is "as worthy as President Obama, Bill Gates" and a list of other modern-day successes.

I agree, but not because of his abilities and potential, as she suggests, when she says: "Who knows what Max is capable of?"

To me, that way of thinking is a trap -- applying the old measures of success to our kids and saying they're going to stack up against the best of them.

I think we need to develop a new value system that sees human worth as a birthright -- as something that can't be elevated or marred by ability level or what we do at any moment in life.

Ellen eludes to this when she says "My son has made a difference in this world and will continue to do so, in his own way."

In our culture, normal is valued and different isn't. As parents of children with disabilities, it's understandable that we'd feel intense pressure to prove to the rest of the world that our children are, indeed, normal.

I know I did this when Ben was younger.

I felt positively gleeful when the psychologist told us he was in the low-average range on his first psych test. When a preschool teacher doing a developmental assessment said he was normal cognitively, I sent out letters about it to family. I had all manner of explanations for why he couldn't do what his typical peers were doing, but was, in fact, brilliant. But really, I just wanted him to be valued and accepted, to belong in the world.

Isn't that, bottom line, what most people are searching for in life?

I still want that, now that Ben's 18 and it's obvious that he'll never 'catch up' or 'pass' as a person without disabilities.

But to see Ben's gifts requires breaking out of conventional notions of normalcy, worth and success.

I'm not sure why philosophers chose cognition as the quality that defines us as human -- thus stripping people with intellectual disabilities of personhood. In this thinking, the higher your IQ, the more human you are. I guess this explains the 'study-drug' phenomenon described recently in the New York Times: a growing number of high-school students who abuse stimulant drugs like Adderall in a bid to get straight As and high SAT scores.

Why didn't the philosophers, instead, choose the universal desire to belong with others as what makes us human?

Don't you feel that longing every time you hear these words in Chapman's Fast Car? 

And I had a feeling that I belonged

And I had a feeling I could be someone, be someone, be someone.

Why didn't the philosophers choose compassion, love and interdependence as the defining qualities of humanity?

I recently listened to a radio interview with Jean Vanier, the philosopher and theologian who founded L'Arche. L'Arche runs homes for adults with intellectual disabilities who live with assistants who ascribe to the philosophy that we can learn about ourselves by living with people with disabilities.

"I think this is the big challenge for humanity," Vanier said. "Can we get together? Can we let the barriers that separate people fall down? If we can move from the place of fear and the place of prejudice and compulsions, just to welcome people, to learn to accept people as they are and to see how beautiful they are."

In talking about a L'Arche resident who was violent, Vanier names the fear within all of us that's awakened by people who are outwardly different. "He triggered in myself my own fragility, my own weaknesses, my own anguish. I could see coming up in myself capacities for violence."

Perhaps that's why people in our culture don't want to "see" disability -- or death, for that matter -- because it forces them to recognize their own vulnerability.

I remember thinking something similar after my dad died: Love is the only thing that endures. Nothing else matters. 

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A different take on the R-word

By Laura Rosen Cohen

I have a child with a genetic disorder who is mentally retarded.

That means that he has cognitive delays and is unlike regular children. He has a difference in his genetic make-up that affects his physical and intellectual abilities.

In the past, individuals with mental disabilities have been called mongoloids, morons, cretins and imbeciles. More recently, the term “mentally retarded” has been used. Now it is fashionable to say that people like my son have developmental disabilities or that they have global developmental delays. I’ve probably used these terms myself on various medical forms, school applications and whatnot.

I don’t, however, have a problem with the term “mentally retarded.”

I do cringe when “retard” is used as an insult, just as I would if I heard someone use “Jew” pejoratively, or as an adjective (“Jewing” someone down in price), or the unspeakable (which seems acceptable when some rap stars say it) “N” word to describe black people.

What I object to is the idea that someone’s reality, the way they were created (in my view, by G-d and in G-d’s image) is contemptible and an insult. I’m not talking about their opinions or politics – just the state in which they entered this earth: disabled, or blind, black, brown, Asian or whatever.

I object to all forms of censorship.

I believe it’s wrong to ban thoughts and words.

In a civilized society, undesirable speech and behaviour are self-policed.

Attempting to ban the word retarded won’t help children like my son.

It just means that people have to tip-toe even further around reality, and become ever more frightened of offending parents and relatives of those with disabilities. Aren’t there enough sensitivity minefields out there already?

That’s why I think the campaign against the R-word is misguided and troubling and bound to fail.

Why?

Because it skirts the truth.

The truth is that we parents of children with intellectual and physical disabilities are terrified that our children cause revulsion. We are afraid that people will abuse and disdain them, and that they will lead meaningless lives.

We are terrified that because our children are mentally slow or trapped in their bodies they won’t get the education they deserve to live up to their potential – whatever that may be.

We are afraid that other than us, who is going to care for them when we can’t? What if they languish, like vegetables? What if their siblings can’t handle it? What will happen to them when we die?

Will someone hurt my child? Trap them? Abuse them? My other kids can talk. My son can’t.

We die a little inside every time strangers stare at our children, or make fun of them.
We do wish that our beautiful and often helpless children were not burdened by their intellectual and physical handicaps. We sometimes, even often, wish we could make it all go away, but we can’t.

We have to live in a world that has progressed but still reviles disability for the most part.

We know that many people are disgusted by our kids and have no patience for them.

But we love them, live for them and would die for them.

Many parents, instead of talking about these dark fears, direct their efforts into campaigns against words, when what they are really worried about is that their kids are being treated as human garbage.

But nobody can be forced into loving our children, or treating them with dignity and compassion.

That kind of grace and charity can only be innate; it can only come from within. Isn't external enforcement of tolerance for any group an oxymoron, by definition?

Banning any particular descriptive will not change social attitudes. Tinkering with language will not affect a fundamental discomfort. An example is food. A food that someone dislikes can be named something else, but if the texture or smell or appearance makes someone uncomfortable, it doesn’t matter what it’s called.

People will still stare and feel pity and revulsion about the disabled no matter how we characterize their intellectual or physical states.

I’m not sure that it’s a wise use of energy to try to change attitudes. That is done through real experience – by hanging out with disabled people. But that is not everyone’s cup of tea.

I think our best hope for changing perceptions is to live our lives with our children and fearlessly incorporate them into society.

But their value needs to speak for itself.

We can’t force, campaign or “language-massage” anyone into loving and respecting our children the way we do.

We can have an honest conversation about our deepest fears for them. And maybe we can put our energy into productive programs to protect our kids, like an extended circle of watch.

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Your infection questions answered

Here are Dr. Michael Gardam's answers to your questions following our interview about infections acquired in hospital. Dr. Gardam is medical director of infection prevention and control at Toronto's University Health Network.

1. Do you believe that it is an acceptable practice to wash with an antibacterial waterless soap instead of using the authentic soap and water? I have heard that in some facilities the doctors/staff are able to see up to three patients and use the waterless alternative in between them and then after the third pt. require that the doctor/staff uses soap and water. As a parent of 1 special needs child and three other children, I always prefer that soap and water be used. Any thoughts?

DR. MICHAEL GARDAM: A LOT OF PEOPLE, INCLUDING SOME HEALTHCARE WORKERS, THINK THAT SOAP AND WATER IS BETTER THAN ALCOHOL GEL AND THAT ALCOHOL GEL IS A BIT OF A CHEAT.

IN FACT, ALCOHOL GEL IS ALMOST ALWAYS SUPERIOR TO SOAP AND WATER: IT KILLS MORE BACTERIA AND VIRUSES, WORKS FASTER, IS LESS DRYING ON THE HANDS, AND CAN BE USED MUCH FASTER AND WHILE YOU ARE MOVING. BECAUSE IT IS SO MUCH EASIER TO USE, HEALTHCARE WORKERS ARE ALSO MUCH MORE LIKELY TO USE IT THAN SOAP AND WATER. SO BOTTOM LINE, ALCOHOL GEL IS A VERY GOOD THING.

2. It is really quite shocking when you think of the "miracles" medicine is capable of and the lengths (and costs) that doctors will go to to save a life yet here is something as simple as soap and water and children are dying needlessly.

I have 2 questions, please.

A. Would a child with a congenital heart condition be more prone to infection?

DR. MICHAEL GARDAM: DEPENDING ON THE HEART CONDITION, THE CHILD MAY BE MORE PRONE TO HAVING HEART INFECTIONS, SPECIFICALLY BACTERIAL INFECTIONS OF THE HEART VALVES (ENDOCARDITIS). ALSO, ANY CHILD THAT REQUIRES HOSPITALIZATION AND OR INVASIVE TREATMENTS LIKE INTRAVENOUS LINES WOULD ALSO BE MORE PREDISPOSED.

B. Is there benefit to prevent infection in the form of prophylactic antibiotics before surgery or probiotics taken while in NICU/PICU?

DR. MICHAEL GARDAM: ANTIBIOTIC PROPHYLAXIS IS DEFINITELY BENEFICIAL BEFORE SOME TYPES OF SURGERIES. THERE ARE VERY CLEAR GUIDELINES AVAILABLE SO IT IS GENERALLY EASY FOR SURGEONS TO KNOW WHETHER THEY ARE USEFUL OR NOT. IN TERMS OF PROBIOTICS, THE JURY IS STILL VERY MUCH OUT ON WHETHER THEY ARE USEFUL--IT ALSO VERY MUCH DEPENDS HOW THEY ARE BEING USED AND WHAT FORMULATION IS BEING USED.

3. Has anyone's child ever gotten an infection from the equipment that is being used in the room? ie the thermometer, pressure cuffs, etc? Like you say not everyone is bold enough to ask for the wipes to clean it or are too embarrassed to do so in front of staff. Even if the staff is washing their hands, don't you feel there should be some standard in place to help stop the spread of infection that is transferred from the equipment and then onto the "clean" hands or that all the equipment is solely for that one pt alone? I know many times they are placed in portable stands and wheeled room to room.

DR. MICHAEL GARDAM: IT IS HARD TO PROVE THAT INFECTIONS CAN BE CAUSED BY POORLY CLEANED, MULTIUSE EQUIPMENT, BUT WE DEFINITELY KNOW THAT BACTERIA CAN LIVE THERE, SO IT IS QUITE REASONABLE TO ASSUME THAT EQUIPMENT MAY BE ONE OF THE MODES RESPONSIBLE FOR PASSING BACTERIA AROUND THE HOSPITAL AND BETWEEN PATIENTS.

ALL MAJOR GUIDELINES STRESS THAT MULTIUSE EQUIPMENT SHOULD BE CLEANED BETWEEN PATIENTS.

4. How do you deal with this scene? When doctors and nurses come into the room the first thing they do is wash their hands and then begin the exam of the child. BUT, then they begin to chart on the computer or use a pen while taking vitals for instance and in turn go back to touching your child? This computer has been used by who knows who that has just touched who knows what and the pens go everywhere -floors , pockets, bathrooms.

How can you stop the spread of infection then and is there an appropriate way to ask that charting/writing be saved for the end of the visit and not during the exam itself?

DR. MICHAEL GARDAM: THERE IS NO EASY ANSWER TO THIS ONE: THE HEALTHCARE WORKERS HAVE IT HALF RIGHT BUT DON'T REALIZE THEY ARE RECONTAMINATING THEMSELVES. WE SOMETIMES DO EXERCISES WITH STAFF WHERE WE COVER A SURFACE WITH PAINT AND HAVE THEM WORK AS THEY NORMALLY DO--IT OFTEN DRIVES HOME THE POINT THAT THEY ARE SPREADING THINGS ALL OVER THE PLACE.

5. Are there any statistics that prove wearing gloves can slow or stop the transfer of infections? While in NICU, many workers would wash their hands and then swiftly put on gloves. However, they would then continue to touch objects in the room, or their faces and then my baby. Also sometimes when reaching for the gloves, it is easy to see that a worker gets more than they need so they then stuff them back into the box. Aren't these gloves now contaminated?? What next?

DR. MICHAEL GARDAM: THERE IS NOT GOOD EVIDENCE FOR USING GLOVES IN NORMAL CIRCUMSTANCES--FOR THE MOST PART THEY ARE MEANT TO PROTECT THE HEALTHCARE WORKER, NOT PATIENTS (EXCEPT OF COURSE STERILE GLOVES DURING PROCEDURES WHICH PROTECT BOTH). SO PUTTING ON GLOVES AND THEN GOING PATIENT TO PATIENT SIMPLY SPREADS THINGS AROUND AS YOU WELL KNOW. THIS IS A MAJOR CHALLENGE WITH HEALTHCARE WORKERS. LIKE MY ANSWER TO THE PREVIOUS QUESTION, SOMETIMES USING A SURROGATE FOR BACTERIA, LIKE PAINT, WILL HELP THEM REALIZE WHAT THEY ARE DOING.

6. This is wonderful, and I applaud Dr Gardam for his attention to this issue. It is, however, possible to get to zero when it comes to central line infections. Cook Children's NICU hasn't had a central line infection in 3 years. The Children's Hospital in Providence has similar stats:

http://www.innovations.ahrq.gov/content.aspx?id=3265

And the Keystone ICU project has had similar results.

http://www.who.int/patientsafety/implementation/bsi/background/en/index.html

So it can be done - with attention to detail, knowledge & the will to change.

Thanks for the great post!

Kate

DR. MICHAEL GARDAM: DON'T GET ME WRONG, SOME TYPES OF INFECTIONS CAN BE DRIVEN VERY CLOSE TO ZERO--CENTRAL LINES ARE ONE OF THEM. OTHER THINGS LIKE C. DIFFICILE ARE SO MUCH MORE COMPLEX THAT ONE CANNOT REALISTICALLY EXPECT TO GET TO ZERO (THERE ARE MANY FACTORS OUTSIDE THE CONTROL OF HOSPITAL STAFF, UNLIKE CENTRAL LINES WHERE THEY HAVE DIRECT CONTROL OVER ALL ASPECTS OF THE LINE). CONGRATULATIONS BY THE WAY--MOST ORGANIZATIONS HAVE NOT ACHIEVED THAT KIND OF SUCCESS.

7. Thanks for your comments, Kate. I'd like to know where we can find similar data in Canadian hospitals. I have heard that the "number of days since last infection" is an incredible motivator for staff and administrators.

Dr. Gardam, is this information available for Canadian hospitals? If so, where would it be found and if not, why not?

DR. MICHAEL GARDAM: WHATEVER CANADIAN DATA EXIST, TYPICALLY COME FROM THE CANADIAN NOSOCOMIAL INFECTION SURVEILLANCE PROGRAM (CNISP) AND THEIR PAPERS ARE AVAILABLE ON LINE THROUGH THE PUBLIC HEALTH AGENCY OF CANADA WEBSITE:

http://www.phac-aspc.gc.ca/nois-sinp/survprog-eng.php

 IT IS HARDER TO GET GOOD CANADIAN DATA HOWEVER BECAUSE HEALTHCARE IS CLEARLY A PROVINCIAL RESPONSIBILITY AND IT IS QUITE HARD TO GET THE PROVINCES ALL LINED UP TO REPORT STUFF TO THE FEDERAL GOVERNMENT--SIMPLY PUT, THERE IS NO REQUIREMENT TO DO SO.

8. Hi Louise and Dr. Gardam!

I have a friend whose baby was a preemie and it got an infection in the NICU, he got brain damage and also he got blind, I see my friend suffer because this could be preventable and nobody apologized, they just told her it happens all the times, but in her heart always will be that feeling that her son could be in a different condition if they followed the sanitize rules. And in my cases my son got a surgery G-tube placement plus a fundoplication and I could not believe that the surgeon has very long nails and also she did not take the nail polish off. And because I felt embarrassed to say something I did not say anything when in my mind. And unfortunately my instinct was right, she did a not good performance. The surgery was wrong and up  until today my son has consequences of that wrong surgery.

The problem is not just that there is a lot of negligent management in the hospitals. The main problem in the first place the doctors do not accept their mistakes and they blame the parents. I complain to the College of Physicians and Surgeons against 12 doctors and after back and forth showing clear mistakes with test and papers. The college just decide to cover the negligent doctors saying they did what they could. God knows how difficult it is for a parent to forget and forgive such kind of mistakes, and more when to see that your son almost died because of this and second that today still has a consequence of these mistakes.

DR. MICHAEL GARDAM: YES, YOUR SAD STORY IS ONE I HAVE HEARD OFTEN--WE CONTINUE TO TREAT HEALTHCARE ASSOCIATED INFECTIONS AS A COST OF DOING BUSINESS ALTHOUGH THE SYSTEM IS STARTING TO WAKE UP AND REALIZE THAT MOST OF THESE ARE ENTIRELY PREVENTABLE. ALL INFECTION GUIDELINES RECOMMEND THAT HEALTHCARE WORKERS HAVE SHORT NAILS WITH NO OR ONLY CLEAR POLISH.

9. What are the top things you would recommend parents with medically fragile children who are in the hospital frequently or for long periods do to protect their children?

We have 2 former preemies (a 4 year old who was trached & vented, and a 1 year old currently trached and vented) - the NICU was pretty low infection, but my daughter's 70 day PICU stay over this winter resulted in a line infection, c. Diff, and 3 other infections... which seems excessive, since she was on contact precautions the entire stay (originally admitted for suspected RSV; caught the first infection before they'd cleared precautions for the virus, and each successive infection came before the last one was cleared). Very frustrating.

DR. MICHAEL GARDAM: THERE IS NO EASY ANSWER TO YOUR QUESTION--INFECTIONS CAN OCCUR THROUGH A VARIETY OF MECHANISMS--THROUGH DEVICES LIKE CENTRAL LINES, URINARY CATHETERS OR ENDOTRACHEAL TUBES (USED WHEN THEY ARE ON A VENTILATOR), SURGICAL WOUNDS, UNCLEAN HEALTHCARE WORKER HANDS, DIRTY EQUIPMENT, DIRTY BEDS OR SURROUNDINGS, OVERUSE OF ANTIBIOTICS ETC. SO THERE IS NO ONE BIG FIX.

I WOULD RECOMMEND THE FOLLOWING THOUGH:

1. BECOME AN INFORMED CONSUMER--IF YOU FEEL COMFORTABLE DOING SO, ASK WHAT THE HOSPITAL IS DOING TO PREVENT THESE THINGS. THERE IS NO DOUBT THAT HAVING A FAMILY RIDE SHOTGUN FOR A HOSPITALIZED PERSON IS A VERY GOOD DEFENCE. WHEN MY FATHER WAS HOSPITALIZED A FEW YEARS AGO, I GENTLY CHALLENGED WHY HE CONTINUED TO HAVE A URINARY CATHETER DAY AFTER DAY. I ALSO POINTED OUT THAT HE WAS AT HIGH RISK FOR GETTING AN INFECTION BECAUSE OF IT. I WAS TOLD NOT TO WORRY BY HIS NURSE BECAUSE THAT WAS WHAT ANTIBIOTICS WERE FOR.

2. CLEAN YOUR OWN HANDS AND THOSE OF YOUR CHILDREN IF THEY ARE OLD ENOUGH.

3. I PERSONALLY SUGGEST TRYING TO CLEAN YOUR CHILD'S IMMEDIATE ENVIRONMENT ALTHOUGH THIS IS OFTEN VERY TRICKY TO DO DEPENDING ON THE CIRCUMSTANCES.

4. ONLY IF YOU FEEL COMFORTABLE, YOU CAN TAKE IT UP A NOTCH AND DIRECTLY TALK ABOUT HEALTHCARE WORKER HAND HYGIENE AND CLEANING. I HAVE SEEN THIS GO HORRIBLY WRONG WHERE PATIENTS AND FAMILIES HAVE BEEN YELLED AT SO BE CAREFUL. THIS IS NOT AN EXCUSE--YOU ARE ENTIRELY WITHIN YOUR RIGHT TO TALK ABOUT THESE THINGS.

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A bit of magic while you wait

Stand, walk, wheel or bounce on 100 coloured tiles to grow images on a screen while you wait for your clinic appointment.

The longer you stay in one spot, the larger the image grows, so kids with the least mobility can create the biggest pictures. Work with other kids to create a wall-sized forest.

Check out this amazing video about how rehab engineers, scientists and artists created ScreenPlay at Holland Bloorview.

This magical waiting room was funded through donations in memory of Dr. Tammy Kagan-Kushnir, a beloved developmental pediatrician in our child development and brain injury programs who died in 2008. It truly reflects the spirit of Holland Bloorview.

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Links

So many fascinating items related to disability and healthcare.

When Doctors Grieve
"Not only do doctors experience grief, but the professional taboo on the emotion also has negative consequences for the doctors themselves, as well as for the quality of care they provide." Read about this Archives of Internal Medicine study in the New York Times. I have plans to interview the lead researcher -- at SickKids here in Toronto -- later this month.

The Trouble With 'Doctor Knows Best'
"The participants responded that they felt limited, almost trapped into certain ways of speaking with their doctors. They said they wanted to collaborate in decisions about their care but felt they couldn't because doctors aften acted authoritarian vs. authoritative. A large number worried about upsetting or angering their doctors... Some even said they feared retribution by doctors." Dr. Pauline Chen writes about a recent study published in Health Affairs: Authoritarian Physicians And Patients' Fear Of Being Labeled Difficult Among Key Obstacles To Shared Decision Making. Have you read Dr. Chen's book: Final Exam: A Surgeon's Reflections on Mortality? It's excellent.

Zimbabwe: Housing Stands Attract Back Errant Husbands
A man who dumped his wife for bearing him a child with cerebral palsy has returned after learning his family was among beneficiaries of residential stands in Mabvuku.

Cure Pity An interesting campaign by Gillette Children's in Minnesota. I was hoping there would be other videos that showed kids with a range of disabilities but this is the only one I saw.

Push Girls Sundance Channel says it's "bringing an uncensored glimpse at what it means to be sexy, ambitious and living with paralysis in Hollywood with PUSH GIRLS, a new original non-fiction series."

The Economic Impact of Autism on Families

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Hospital infections kill, are preventable

Barb Farlow sent me this video called Gabby. It's about a couple who lost their daughter to a preventable infection she picked up in a newborn intensive care unit (NICU). The video was produced by the Perinatal Quality Collaborative of North Carolina. Barb is on the Stop Infections Now Collaborative of the Canadian Patient Safety Institute. Watch the video.

The images above are from a piece in the New England Journal of Medicine.

The top one is the handprint of a health-care worker after examining a patient's stomach. The pink colonies are methicillin-resistant Staphylococcus aureus (MRSA), a virulent type of bacteria that doesn't respond to standard antibiotics. The bottom image is the worker's hand after washing.

MRSA bacteria can enter the body through a surgical wound, IV, catheter or breathing tube. MRSA infections in the bloodstream, heart, lungs and urine can be deadly. Those pretty-pink handprints can kill.

One in 10 hospital patients will develop a common or antibiotic-resistant infection after being admitted. In a small Canadian study of hospitalized children, 9 per cent developed an infection while in hospital.

When an IV, catheter or breathing tube isn't inserted and cared for properly, bacteria that normally resides on the skin without problems can gain entry and cause infection. You may also pick up a superbug like MRSA or C. difficile from the environment -- by touching a dirty bed rail, light switch or a person who hasn't washed their hands.

Health-care associated infections (HAI), as they're now called, are the fourth leading cause of death in Canada.  Between 9,000 and 12,000 Canadians die each year as a result, says Dr. Michael Gardam, medical director of infection prevention and control at Toronto's University Health Network. I spoke to Dr. Gardam to learn more.

BLOOM: How many infections acquired in hospital are preventable?

Dr. Michael Gardam: Ten years ago we would have said at least a third of them, but now we would say the vast majority. We used to consider many of these infections as the cost of doing business but now realize they can be dramatically reduced.

BLOOM: Is lack of handwashing among professionals the main cause?

Dr. Michael Gardam: Handwashing has certainly gotten a lot of attention. The World Health Organization and others say poor hand hygiene is responsible for at least 50 per cent of these infections. But you can also catch an infection from the environment. For example, a health-care worker's hands may be pristine but a person could pick up C. difficile from the bed rails. Or a patient can develop C. difficile in a room where a previous patient had it, if the room isn't cleaned properly.

A lot of hospital infections happen because we're doing something to you -- inserting a catheter or IV. Did the worker properly wash your skin? Are they checking the IV site daily to see if it's red or sore, and are they discontinuing the IV if you don't need it? If the IV isn't cared for properly you can develop an infection from your own skin flora. That can cause a skin infection or get into your blood and cause life-threatening sepsis.

Surgery is an area that's well-studied on how to prevent infections. There are multiple things you can do to decrease the infection rate, but the system is still fairly slow to adopt all of them.

There are times when we can do everything perfectly and the person still might get an infection. But many times we are not doing things perfectly. With most patients who get an infection, we can identify things that weren't done properly.

BLOOM: How big a problem are these infections for preemies or for children with disabilities or chronic conditions who may be hospitalized frequently?

Dr. Michael Gardam: Infection is one of the main causes of death in preemies and there are multiple reports of child deaths from infection acquired in the NICU. They've linked these infections to handwashing and to the environment as well. For example, nurses wearing artificial nails have been linked to deadly outbreaks: fungal infections can get under the nail and then be passed on to these remarkably susceptible children. Their skin isn't normal, they have multiple IVs and are often intubated and once they're colonized with organisms it's easy for those organisms to walk right in.

Children with disabilities would be at the same risk as other children who are having IVs or catheters or breathing tubes put in. What increases the risk are pre-existing conditions that affect the immune system -- like diabetes. Of course the more you're in the hospital, the more likely you are to catch something.

BLOOM: What kind of disabilities can be caused by serious infections?

Dr. Michael Gardam: Brain infections can lead to permanent brain damage and lung infections can cause chronic lung problems.

BLOOM: Would a family be informed that the infection their child had was preventable?

Dr. Michael Gardam: Usually not. Not because the staff are lying, but because they see these infections as a cost of doing business, and it's not just health-care workers, it's all of society. Let's say a loved one is in the ICU and the doctor comes out and tells the family "We gave him the wrong dose of this drug and he went into cardiac arrest and died." I'm sure the family would think of this as a mistake, an error, and might talk about suing. But if the same doctor comes out and says "Your loved one caught an infection in the ICU and we gave him antitbiotics but they weren't strong enough and he died," people accept that kind of news. Infections are still seen as things that happen.

BLOOM: But you've just said that most are preventable?

Dr. Michael Gardam: It's a brand new world for us. We're waking up and realizing that these things are preventable. Twelve years ago when I trained in infection, doctors were saying there was no way of ever preventing central-line infections, they were simply the cost of doing business. And now we know they can be prevented. We'll never get to zero but we can bring them down remarkably.

BLOOM: So why would a health-care worker not do everything possible to eliminate them?

Dr. Michael Gardam: Let's say I'm a surgeon and my infection rate is 2 per cent. If I do your surgery I can say there's a 98 per cent chance that you'll be fine. If I do all of these infection practices I may be able to say there's a 99 per cent chance you'll be fine. Some surgeons are looking at probability and stats rather than individuals. They're not thinking about the one patient who gets an infection for whom it's 100 per cent. The surgeon will be upset if one of his patients gets an infection, but he won't put two and two together. We're changing, but at a snail's pace.

BLOOM: What would you recommend parents of preemies or children with disabilities who are hospitalized do to try to prevent their child from getting an infection?

Dr. Michael Gardam: Well, when I was hospitalized in my own hospital a year ago, I washed my hands multiple times a day with alcohol gel, which is generally better than soap. I did this because many of the things you can contract in hospital you pick up because you're touching stuff. So as a parent, encourage your kid to clean their hands frequently and clean your own hands. I also used a container of disinfectant wipes to clean my room. I would wipe down my IV pole and the bed rails and the reason I did that is because no one else was doing it. Most hospitals have these wipes available. Clearly some people might take exception to a family cleaning up the room, but that's what I did.

You can let the health-care worker know that you understand most hospital infections can be prevented and you'd like to work with them to protect your child. The trick is to get the point across without directly challenging the health-care worker.

You can ask health-care workers to clean their hands, but the power differential there is absolutely unequal and to some extent you're at their mercy. When I'm rounding with residents, I tell them to always wash their hands in front of the patient, even if they've just washed their hands.

BLOOM: Do you get pushback on that?

Dr. Michael Gardam: Yes, I do. But I tell the residents that it doesn't matter whether you just did it, the patient cares about seeing it done and it's not about you. A woman was telling me about her son who was hospitalized for Crohn's disease and the IV team came in to start the IV and she knew they hadn't cleaned their hands. And she was struggling over how she could bring it up in a way that they wouldn't be offended and potentially not start her son's IV. What do you do? You don't want to be perceived as a difficult person. In the end you don't say anything because you're afraid.

BLOOM: I'm having a hard time wrapping my head around the idea that doctors and nurses know what to do to prevent these infections and they're not doing them.

Dr. Michael Gardam: There are major cultural impediments. If you ask health-care workers why they don't follow these known practices you'll hear "I don't have time" or "I'm too busy" or "I wasn't educated properly" or "Frankly, no one else is doing it that way." But it doesn't take long to do these things. There's a disconnect between their actions and what happens to their patients.

When a patient has been in hospital for days and gets an infection, you can't really pinpoint one person who's responsible. It's systemic. Multiple people occasionally don't follow all of the practices, which leads to multiple circumstances when a person could develop an infection. So while the health-care worker feels sad that a person got sick or may have even died, they don't know it was a result of their action.

BLOOM: What are other barriers to getting compliance with infection control?

Dr. Michael Gardam: A prevalent behaviour in doctors in general is that they have their one piece of the puzzle -- like surgery -- and others can deal with the rest. So as a doctor, I kind of understand how a surgeon would say: "I'm going to do the best operation possible," but not look at it holistically, in terms of feeling responsible for the entire care the patient receives in the hospital before and afterwards.

For example, if the room isn't cleaned properly the patient may become ill but a surgeon may not see that as part of the patient's care. There's a sense of "The operation went fine, our job is done." One thing we're doing now to close the loop at UHN is to treat all serious infections as adverse events, where an incident report is filled out and the people responsible have to report back on what things were not in place to prevent that infection.

BLOOM: Why doesn't a teaching hospital commit to a policy of zero tolerance for staff who don't follow all prevention practices?

Dr. Michael Gardam: Doctors wield enormous power and are typically not hospital employees. You might be able to do that to a hospital employee, but not a doctor who works "at" the hospital but not "for" the hospital. Let's says there's a surgeon at a teaching hospital who's a brilliant researcher and she's getting the hospital's name out there. Are you going to take away the hospital privileges of someone like that because she doesn't buy the corporate values about infection prevention? Not following these practices shouldn't be tolerated, but it's difficult for hospitals (to enforce). The tide is starting to turn, however, and more and more physicians are getting called on such behaviours.

BLOOM: I'm astounded that people wouldn't willingly follow these practices?

Dr. Michael Gardam: People get stuck in certain types of behaviours. They may do things that they know aren't good, but education may not motivate them to stop.

One doctor who's become a 'born-again' patient safety guy told me he resisted the whole central line practice bundle. "I refused to do it because I felt my patients weren't getting infected," he said. "Then they started sending out infection rates by the doctor's name and I was a negative outlier. Everyone else was doing it and I felt like an idiot." In this case no amount of book evidence had an effect because the surgeon needed real-life evidence in front of his face. He knew he should be putting in a line in a different way but it didn't seem relevant to him.

BLOOM: What can we do to change the culture?

Dr. Michael Gardam: We're not perfect, but in the last six years we've seen significant organizational change at UHN. The way we've done it is to engage frontline staff and have them own quality improvement initiatives. We don't lead these initiatives ourselves. Hand hygiene improved when infection control got out of the hand hygiene business.

We tell stories of patients and we ask staff to tell their own stories about patient infections. Sometimes we ask a group of staff to design a system to do the opposite of what we want it to do: How would you ensure that every child on this unit got a urinary tract infection and it would be severe? List all the ways that would happen. Are there any things on the list that you're currently doing? Is there something you'd like to see change? Usually there are a few people who want to make a change and they'll lead these changes.

BLOOM: I'm still astounded that you need to be a 'psychologist' to get these changes made when we know they can save lives.

Dr. Michael Gardam: Health-care workers are people and they have the same issues as everyone else. A lot of this is deeply-ingrained behaviour. To help us along, we need the public to say "We're not taking this anymore" and it's a tricky line to walk. If you push too hard health-care workers may shut you out and feel offended. By the same token, we need to hear the message.

It's not about the health-care provider, it's about you, the patient.

If you'd like to ask Dr. Gardam a question about infection prevention, post it here and we'll do a follow-up blog with answers.

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