We celebrate 'a smile, a hand reaching out to say more'

By Louise Kinross

Shawna Perkins loves to play. The art therapist spends her days with babies and young children in Holland Bloorview’s therapeutic playroom. Her little patients may be here for rehab following a painful surgery, to recover from a traumatic brain injury, or because their parents need to learn how to care for their child's ventilator at home. The playroom is a happy place, full of bright toys, comfy mats and art supplies; tables for water play or play dough; and a ball pit and child-sized kitchen. Warm sun streams in through a floor-to-ceiling window. Shawna coordinates the playroom with three therapeutic recreation assistants and up to 70 volunteers a week. No matter what the day, the playroom is a welcome respite from hospital life.

BLOOM: What is the purpose of the therapeutic playroom?

Shawna Perkins: It’s to provide fun activities in a safe, play-based environment, to help kids cope with hospitalization, and to offer parents breaks as needed. Parents may need to get a meal, take a rest or visit with a social worker, knowing that their child is safe and engaged and happy. We’re also part of the interdisciplinary team working toward a child’s rehab goals, but we do it through play.

BLOOM: How do you help kids cope with being in hospital?

Shawna Perkins: In the hospital, children don’t have the same choices they have at home. They have to do things they don't want to do. In the playroom, we want to give kids a space they feel is their own. We encourage them to make choices here, and try to give them a sense of control and mastery in what they do.

BLOOM: How did you get into this field?

Shawna Perkins: I did my master’s in Creative Art Therapies at Concordia University, and my background is as an art therapist. While at school I had the experience of being the inclusion coordinator for the town of Newmarket, overseeing all of the summer camps in the town. When I came back from Montreal I was looking for a place to work where I would be a member of a team, and where I could continue my education. I got my first position as the coordinator of our Ronald McDonald Playroom. I did that for two years, and I’ve been the coordinator of our therapeutic playroom for eight years.

BLOOM: What’s the greatest challenge?

Shawna Perkins: We see families who have come through many difficult situations and who may be experiencing a sense of loss or grief. If their child has lost mobility, or the way they communicate has changed, parents may be unsure about how to engage their child in play again.

BLOOM: I’m sure some parents must feel in shock.

Shawna Perkins: They’re often dealing with a lot of trauma. We work really closely with their kids to look for positive responses to what we’re doing, and to foster their participation and instill hope. Even the smallest progression—a smile, a hand reaching out to say more, is something we celebrate together.

Parents are trying to balance many needs with other family members at home and with their child here.

When we invite them into the playroom, we’ll ask questions about what their child has enjoyed in the past, so that we can build on those experiences here. Over time children get to know us and feel safe and comfortable, and that’s when we see them blossom.

BLOOM: Do you ever find parents are so focused on their child’s rehab goals that it’s hard for them to just enjoy their child?

Shawna Perkins: They do have so many goals and so much ‘homework,’ and we’d like them to know they can leave those things behind in the playroom. We recently started a Baby and Me group with Andrea Lamont in music therapy. The intention of that group is to provide an opportunity for parent and child to enjoy music together, create a special work of art to celebrate the child, and to shift the focus to their relationship and bonding.

BLOOM: What kind of change do you see in kids?

Shawna Perkins: When kids first come in to the playroom, they may be overwhelmed, and begin pulling everything off the shelf. Our program provides structure and as they learn the routine, they become able to participate in small group activities with children of the same age.

Kids may come in with very limited communication but, over time, they begin expressing themselves through play, by making choices and in their sense of humour. They may enjoy playing silly games and we find out what makes them belly laugh. Or who they are comes out in the art work they make.

BLOOM: What’s the greatest joy of your work?

Shawna Perkins: Every child is motivated in some way to play, and can be engaged creatively, and that’s an amazing thing to get to do when you come to work every day.

BLOOM: What drew you to art therapy?

Shawna Perkins: When I was younger I had an opportunity to work at a camp for girls, and I saw the potential to have a positive impact on other people. I’ve always been able to express myself through the arts, and now that I work with the therapeutic recreation team, I see how important it is for children to have a sense of belonging and a sense of community. I think all of those experiences impacted me.

BLOOM: How do you manage the emotions that come with this work?

Shawna Perkins: As a staff member, we care deeply about our families. We feel their emotions and we feel for them. The work we do can be difficult, and it’s important that staff check in on each other to debrief, to talk about tough situations, and also, to celebrate the joys of our jobs as well. My office is a tight space that I share with five other people, and we become close quickly. We often share similar case loads and similar feelings.

On my second mat leave I started practising mindfulness, and I was so pleased to find out that Anna Marie Batelaan was offering a mindfulness meditation group for staff on Tuesdays at lunch. That gives me an opportunity once a week in the middle of the day to check in with myself and with other colleagues, and to reflect on where I am. How am I doing, what am I noticing? Maybe I can shift things a bit to ground myself better, so I’m better equipped to return to work.

BLOOM: What kind of people volunteer in the playroom?

Shawna Perkins: Everyone from high school and university students to retired people in their 70s. Some hope to develop skills to help them in particular career paths, and others just like playing with the little guys. We have people who work full-time and take time out of their work week to come. Our volunteers are amazing. We have multiple people come in every day, seven days a week, and about 150 in total.

BLOOM: If you could change something in children’s rehab, what would it be?

Shawna Perkins: I’d like to see us better connect the system, as we talk about in our strategic plan. For example, I refer families to infant development services when they go home, and in the GTA it’s easy to connect them, but the services run differently in each region of Ontario.

BLOOM: So how you access these services isn’t equitable, depending on where you live?

Shawna Perkins: Yes. As a health-care provider trying to do a good job, it’s challenging. Right now I’m doing some leg work to find out where the programs are in different communities, how they take referrals and what the wait lists are like.

BLOOM: What do you enjoy about working with young children?

Shawna Perkins: I like talking to families about what their child can do when they go home. We try to expose kids throughout the week to a range of activities, so parents can identify what their child’s interests are. For some families, the way their child plays will look different when they go home.

They have questions: What supports will I need? Is funding available? Can I stay with my child in a program if they need support? Are there programs for children with disabilities? If my child goes to an integrated program, will my child be the only one with a disability? These first steps are so important for a child to be set up for a sense of belonging at home and in their community.

BLOOM: How have you changed as a result of your work here?

Shawna Perkins: I’m a bigger advocate of inclusion and accessibility outside of work. It’s important that I pass those lessons I’ve learned to my kids, and I want inclusion to be a part of their world as they grow up.

Working here has given me perspective on what really matters. We do come across a lot of suffering, and it puts things in perspective in terms of what’s important in life. We also see a lot of resiliency in the children and families we work with, and a lot of hope. I think we need to acknowledge that there’s a lot of good in this world, and to honour our families.

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A new approach to autism

By Louise Kinross

Jessica Brian is a psychologist and clinician investigator at Holland Bloorview who co-leads our Autism Research Centre. She researches the earliest signs of autism in babies and develops and tests parent-led interventions for toddlers. She came to Holland Bloorview from SickKids in 2004, when the child development program moved here. When Jessica isn’t answering research questions, she does assessments with families who are here to see if their child has autism.

BLOOM: What led you into the field?

Jessica Brian: I’m one of those weird people that knew I wanted to be a psychologist as a teenager. I’ve always liked helping people and supporting people who I felt didn’t necessarily have a voice. I got interested in autism because I read about a young girl with autism who was considered to be quite low-functioning and almost non-verbal, but who had amazing artistic abilities. I saw her sketches and read about her and it captured my interest.

Soon after that I lived with a family for two or three summers and worked with their son over a few years. During that time he received a diagnosis of autism. I travelled with the family through having initial concerns about autism and having those concerns confirmed, to working really hard to help him develop language and build relationships.

He was such a fun kid to work with—smart, funny, playful—but we also had to help him get through big upsets and learn to be successful in school, at camp, and in the community. I saw how hard his parents worked to give him every opportunity to enrich his development, how far they had to stretch their resources, and the advocacy battles they had to engage in. I felt excited with every little gain he made. This was a very special experience that probably shaped the rest of my career.

BLOOM: What why did you decide to work with children as opposed to adults?

Jessica Brian: Kids are much more fun than adults. They’re more creative and more playful. I really enjoy playing with kids. I also really enjoy working with families, and I think this is one of the best ways to support children.

BLOOM: Are you more passionate about your clinical or research role?

Jessica Brian: I think this is the perfect job because of the balance. The two pieces are aligned but they’re very different in terms of a typical day, and that keeps me on my toes. The two streams inform each other. The clinical gives me great questions and the research helps me to answer those questions.

BLOOM: What is a clinic day like?

Jessica Brian: There really is no typical day. In clinic I would usually see a family I’ve never met before. I get the chart with some information about the history of the child and the parents’ primary concerns and reports from school or therapists, if the child is older. Then I meet with the family. I explain to them why they’re here. Sadly, it hasn’t always been explained well why they have been referred here. We have a lengthy discussion about the child’s early development and their concerns. Then I work with the child in a semi-structured play task for about an hour.

BLOOM: Do the parents observe the play?

Jessica Brian: If the child is young they sit in.

BLOOM: What ages of kids do you see?

Jessica Brian: The youngest child I’ve seen in clinic is nine months and the oldest is 17 years.

BLOOM: I thought you would mainly see preschoolers.

Jessica Brian: That may be true as an organization. The average age of diagnosis is around four years. But I often see more complex kids who may have gone through their first 15 years with no diagnosis. Or sometimes they have an existing diagnosis—of anxiety disorder or ADHD and anxiety—but it doesn’t explain the whole picture for the family or the individual.

Some teenagers have done research on Asperger’s or high-functioning autism and approach their parents to say this captures me and I think it explains the challenges I’ve had. I also see kids who had a diagnosis of intellectual disability, and where autism hasn’t been considered.

Autism is becoming more well known. That means that more people hear about it and identify the signs that may fit with what they’re seeing in their child. I also see very young kids under the age of two. Because awareness of autism is out there, families are raising concerns with their doctors and children are being referred much earlier, and that’s a huge shift we’ve seen in the last five years.

BLOOM: You explained how you got interested in autism. What keeps you engaged?

Jessica Brian: Everything! It’s such an interesting condition because it manifests so differently in every child and the interaction between what I do clinically and in research keeps generating new ideas. It really does not get boring. I love that my research is intervention and I love that I get to do intervention with these kids and families and see gains being made. There is always a new challenge to grapple with and I see results which is super exciting.

BLOOM: What is most challenging about the work, perhaps in a not positive way?

Jessica Brian: I think balance is a problem. The truth is that it’s hard to manage both the clinical and research expectations.

The work can be emotionally draining. Families often have a very emotional reaction to the diagnosis. There are lots of families for whom this is hard news to hear, and you have to spend a lot of time helping them get through a very difficult time. That’s not always the case. Some families come in well prepared and they want the diagnosis to get services for their child.

People often say ‘Isn’t it depressing to always tell families that their child has developmental challenges?’ That is the reality for the child and family. The role I play is to help them interpret the news in a way that gives them hope and plans for the future. It’s potentially draining but I believe it’s really valuable.

BLOOM: Of course the way you deliver the news can empower families. But do you ever leave work feeling terrible after supporting a very distraught family?

Jessica Brian: I do. Absolutely.

BLOOM: Is there anything you do to help cope?

Jessica Brian: I try hard to remind other people to take care of themselves, but I don’t do a very good job of it myself. The borders between my work day and home day include a one hour plus commute where I listen to CBC radio. Half the time I’m not listening. I zone out and relive what happened during the day. Having that hour to do that really helps.

BLOOM: To decompress.

Jessica Brian: Yes, to decompress. I also use my husband as a sounding board if I think the system has been unfair to a family, because that happens a lot. He’s a behaviour analyst.

BLOOM: So he works with children with autism?

Jessica Brian: Yes, that’s how we met. I did an internship in Princeton, New Jersey, and he was working at the school where I did my internship.

BLOOM: Oh, that’s so interesting.

Jessica Brian: We have lots to talk about.

BLOOM: Are there other things you do to help you cope on days that are emotionally difficult?

Jessica Brian: Yes. I talk to my ‘people.’ My team here is really supportive. So I’ll burst into Evdokia’s office and use her as a sounding board, or speak to one of the nurses or research staff who knows the system and families well. I think it’s important to model for trainees that you shouldn’t have to ‘have it all together.’ And if you think you have it all together, you’re missing something.

With the kids who come to us, it’s not usually a clear-cut story in terms of ‘this is the answer.’ You need to think carefully about all of these pieces of evidence that contribute to the diagnosis and there’s often some level of uncertainty, and you need to share that too. Things aren’t always black or white, and if you think you’re right all the time, that’s ridiculous.

Particularly in working with my research families over time, I find most families are very open to hearing my own uncertainty. If I see a really young kid at 18 months and the picture isn’t totally clear, I don’t pretend I’m more confident than I am. I’ve learned over the years that you can collaborate with families. When there’s uncertainty, it becomes a partnership where families, who see their kid every day, can go away thinking about what else to watch for.

BLOOM: So they can be your eyes.

Jessica Brian: Yes.

BLOOM: Can you describe your research a bit more?

Jessica Brian: The two arms go nicely together—what are the earliest signs that predict autism and how do you intervene? The intervention I focus on is called behavioural and developmental. I co-developed it with a colleague in Halifax. It’s a parent-mediated intervention where we teach parents to interact with their toddlers in ways that will enhance the toddler’s social communication and connectedness. I have amazing research staff who are trained to go into the family’s homes for 12 weeks.

BLOOM: Is this once a week?

Jessica Brian: It’s three times a week the first week, two times the second week and then once a week. They teach the parents ways to enhance their child’s directed or functional communication and to share positive emotion.

BLOOM: What's an example of how they may encourage a child to communicate more directly with them?

Jessica Brian: We ask them to observe their child and think very carefully about every activity they engage in and figure out what is it about the activity that the child likes. One child might like a pop-up toy because of the sound, whereas another child may like it because of the feeling of the buttons. Once a family has identified what the child really likes and the details, they’re coached to place a bit of a language demand to keep an interaction like that with a toy going.

So, if the child really likes the sound the pop-up makes, the parent might block the door from opening and say “pop,” and if the child is looking at the toy or the parent and makes a vocal attempt, the moment they make the attempt they open the door. They learn creative ways to be part of a game and to be really fun and playful.

BLOOM: What kind of changes are you seeing?

Jessica Brian: We did a pilot study with 20 families in Halifax and Toronto. The children were about 12 to 32 months. The kids of the families who had the 12 weeks of coaching had gains in how much they respond when parents give them a verbal prompt, and in how much they made their own verbal initiations. This is a big deal in autism because kids are often very delayed in making social initiations.

BLOOM: Would this be a request?

Jessica Brian: It's usually in the form of a request. The reason we work on requesting so much in autism is we know how often motivation is a challenge. We want to capitalize on the moment the kid is most motivated to get something. That's when we make them work the hardest. The other thing we saw in the pilot study was that parents were smiling more and kids were looking at their parents more. It's hard to smile when you're stressed out and your kid is not responding.

BLOOM: So these gains were compared to how the kids tested before the program?

Jessica Brian: Yes, at baseline. We've also done a randomized control trial of 62 kids in Toronto and Halifax, and that paper is under review. The results look consistent with what we found in the pilot, except the gains are seen only in the treatment group.

However, even in the control group we gave families the option, after the intervention, of getting the Social ABCs, because we didn't feel comfortable not offering a family the intervention.

BLOOM: To what do you attribute the changes?

Jessica Brian: We're talking about a very short period of time, three months. We don't see change in some of the big standardized measures, like a change in IQ, but that can be a funny concept in two year olds.

We do see the kids achieve small communication and relationship goals that we feel are very important to build the foundation of social communication. If we can get those small changes over a small period of time, and have empowered the families to have a way to interact with their kids, we hope it will lead to larger gains over time.

BLOOM: We spoke last year about a similar study that was done in the U.K., and some unfortunate media coverage where the parents were referred to as 'super parents.'

Jessica Brian: Yes, I did about six interviews that day and every single interviewer used that term 'super parents.' I don't love that term. I think it puts undue pressure on those parents, and it's also not fair to families who can't take it on. There are families who can't do the training, for multiple reasons. Perhaps they have other kids with autism who need attention, or they have limited financial resources and can't take the time off work to learn the skills.

BLOOM: But isn't it also true that not every child will make significant gains, even when parents can do the training?

Jessica Brian: That's right. They were group-based changes. The amount of change varies from one child to another. That's really important to remember. We did evaluate parents' delivery of the intervention. We videotaped them and coded their behaviour. We were able to see that almost every family attained a level of fidelity where they were delivering the program the way we wanted them to.

BLOOM: So it wasn't because of parent performance, or something a parent did or didn't do, that some kids didn't progress as much?

Jessica Brian: No. There are kids who will make minimal gains despite how hard a parent works. That is especially hard for families who work very hard and feel a tremendous investment. We have to be upfront and cautious in what we say this intervention can deliver, and assure parents that they're doing all they can.

Every kid made some gains that parents could celebrate, and we helped parents look at those gains and not overlook them. Our research staff are amazing. They will have that conversation with a family where they tell them there's nothing more you could or should be doing. What you're doing is a perfect fit for what your child needs.

Sometimes during the intervention a child who was initially showing some signs of autism is diagnosed with autism. Families may have hoped that the intervention will prevent their child from receiving the diagnosis, and those parents can feel deflated.

BLOOM: We've talked before about how some adults with autism feel there should be more focus on acceptance, and some oppose traditional behaviour therapy. How do you balance the idea of acceptance and the idea of cure?

Jessica Brian: One thing that's really helpful is I have worked with kids of all ages, as well as young adults. So I have a nice broad perspective of that developmental pathway to share with families. I'm aware of the advocacy efforts by adults, and and they're extremely important. With programs like the Social ABCs, we're not trying to fix or cure or change the autism.

One of the reviewers of our randomized trial asked how many children came in with autism and how many went out? We're not trying to reduce how many kids have autism. We're trying to boost the skill set they have. We're trying to help parents create an environment where the kid will be most successful and be able to thrive.

Using our knowledge about autism in babies, we want to help parents interact in ways that our research would suggest will optimize the learning environment. So it's about supporting the parents to create a good fit between the child and their environment.

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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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A lesson in love

Donna Kirk is the author of Finding Matthew: A Child with Brain Damage, A Young Man with Mental Illness, A Son and Brother with Extraordinary Spirit. Here she shares the challenges and joys in her family's remarkable journey to give Matthew (above left with his sister Kelley) a good life. Thank you Donna! Louise

By Donna Kirk

“Your son is a vegetable with a heartbeat.”

The head pediatrician at the hospital dismissed our first born child with a wave of his hand. My husband Ed and I were dumbfounded.

“Your child will never know you or progress beyond the infant stage. I recommend that you institutionalize him as soon as a bed becomes available. I’ll give the consent forms for the home to the neo-natal nurses.”

Our child’s name was Matthew. He had suffered oxygen loss at birth and could neither suck nor swallow. He was 10 days old and had been at the children’s hospital for nine days. As we listened to the doctor, I held our beautiful blond baby in my arms. His blue eyes looked up at me and he gripped my finger with his tiny hand. Matthew started to cry and so did we. The doctor looked at him, then turned and walked away. He hadn’t once called him by name.

We dubbed this pediatrician Doctor Doom and repeated his words to the nurses. One nurse handed us a box of tissues and told us she had 40 years’ experience with brain-damaged babies. In her opinion, Matthew would progress. The nurses became our first advocates. We ripped up the consent forms for the children’s home.

Two months later we brought Matthew home. He could swallow, suck and hold his head up and he weighed a robust eight pounds. He was eating, and loving, rice cereal.

Even though he cried day and night, we adored our baby. Car rides soothed him and Gordon Lightfoot music put him to sleep. I never forgot Doctor Doom’s prediction that Matthew could die at any time and kept him close to me during the day. At night, I checked him often. We were glad he was our only child and we could direct all our attention to his needs.

Matthew smiled when he was four months old and turned over both ways at five months. Our Mississauga pediatrician was our second strong advocate. “Keep doing what you’re doing Mom and Dad,” he said. “Matt’s making great progress.”

At 14 months, Matthew still wasn’t sitting. His left side was weak and he toppled over when we played sitting games with him. One day in a grocery line-up, he was propped up in the cart to keep him upright. A woman behind us watched him with great interest. She asked how old he was. 

“Fourteen months! He’s still not sitting?” she said. “Is he retarded?”

“Not as retarded as you are,” I said. Matt and I cried all the way home.

Ed and I decided our son needed muscle power and enrolled him in swimming classes in a program that offered instruction to children with disabilities. Matthew soon learned the route to his lessons and cried all the way there. I cried during the session because I thought they would drown him. Afterwards, he laughed all the way home and I laughed with him. He was so smart.

In 1972, at age two, Matt was the only student from the swim program chosen for a documentary to be broadcast on national television. Ed, my mother and I watched the filming.

The swimming instructor carried Matthew into the pool and released him under the water. Then she got out of the pool. My mother gasped and covered her face with her hands. When I urged her to watch, she peeked through her fingers. Matthew swam to the side, reached up and pulled himself out, then sat on the deck.

I called Doctor Doom’s office at the children’s hospital. We hadn’t seen him since Matt’s discharge. I told his secretary to make sure he watched “the vegetable” swimming on national television. The next day she called back. Would we please bring Matthew in?

Doctor Doom examined Matthew and declared him to be a healthy two-year old. He actually hugged him before handing him over to me. I was the proudest mother on the planet.

____________

Ed and I wanted more children. I hadn’t conceived since Matthew’s birth so we registered for adoption. Our daughter Kelley arrived shortly after Matt’s second birthday. He refused to look at her, clung to me and cried all the more. Ed and I were up every night with two children. Then, when Kelley was six weeks old, I became pregnant. Our second son, Joseph, was born 10 months later. We had three children under the age of three.

Kelley and Joseph grew and surpassed their brother. They walked, talked, learned to use the toilet and slept through the night. Although Matthew walked when he was seven, he didn’t speak, needed diapers and awoke for many hours every night. I lay awake and listened to his shouts.

Matthew had digestion problems since infancy. He regurgitated food constantly. Then a strange behaviour crept in when he was about five. He started throwing up at will, particularly when our attention was elsewhere. Nothing we tried altered this behaviour.

Ed and I realized we didn’t have the skills to help him. The demands of our complex life overwhelmed us. We were exhausted and our marriage was suffering. 

When Matthew was eight, he went to live at a residence for children and adults with developmental disabilities. Within weeks, he stopped vomiting and learned to use the toilet. Although delighted with his progress, we felt like failures. Strangers were able to help the child we loved.

Even though we visited Matthew often and he spent every Sunday with us, Ed and I never adjusted to his life in a house with 12 other children with disabilities. And, the staffing was inadequate in our opinion. But Matthew seemed happy. He attended local integrated schools where he was a popular student.

At age 18, he started having what staff at the home described as rage episodes. He shouted and twirled in a wide circle, his face red and his eyes wild. These sessions ended with the ingestion of inedible objects: pens, pencils, whole toothbrushes and small plastic things.

Multiple surgeries were required to remove these items. Matthew was diagnosed with Pica eating disorder and autism. The home’s psychiatrist prescribed medication that initially made him docile, then had no effect.

In 1993, Matthew swallowed a rubber glove which lodged in his intestine and burst his bowel. After life-saving surgery, he wore an ileostomy bag for months until his bowel was reconnected.

Ed and I were convinced our son would die at the home. We had never stopped searching for a better life for him, and doubled our efforts. A community agency offered a model of service called homeshare, and they agreed to support Matthew.

In September 1995, at age 25, Matthew moved into a single family home in Oakville. A woman named Marguerite became his new caregiver. There were no other people with disabilities in the home. Matt could roam around his house without encountering locked doors. But all small objects and medications were locked away.

Marguerite  broke Matthew’s habit of leaving his room each night. Although he still didn’t sleep well, now he was quiet. She worked with him to enhance the universal signs he used to communicate his needs. Within weeks, he was calmer and slept better. The anger episodes lessened. Pica attempts were few, then disappeared.

Matthew enjoyed the community each day with Beverley, his job coach. They visited the library, malls, restaurants and the local YMCA. He had a paying job delivering newspapers and a bank account where he kept his money. For the first time in 17 years, Ed and I knew our son had a meaningful life. Marguerite and Beverley supported Matthew for 15 years. 

____________

In 2009, Matthew’s agitation worsened, culminating in a rage incident that required police intervention. Matthew was admitted to a hospital psychiatric ward. A psychiatrist diagnosed him with agitated depression, and over the next year, different medications were prescribed. When they failed to alter his condition for a consistent length of time, we agreed to electric shock therapy.

But a cure for our son’s mental illness was not to be. The day before his first shock treatment, he aspirated food and became critically ill with pneumonia. His lungs, compromised by many bouts of pneumonia, could not mend.
   

After a four-month battle, brave Matthew died on July 6, 2010. My husband and I, Kelley and Joseph, Marguerite and Beverley, and his limitless friends and advocates were heartbroken.

____________

Matthew taught us the rewards of support, advocacy and stewardship. He taught us the joy and despair of unconditional love. He was the person who inspired me most.

It’s hard to adjust to life without him.

Royalties of Donna's book go to Brampton Caledon Community Living, which supported Matthew for 15 years. "My husband and I also give out an award each year called 'The Reese Matthew Kirk Above and Beyond Award,'" Donna writes. "This is a cash prize, plus an opportunity to attend a profession-related course of the winner’s choice. The candidates are employees of BCCL chosen by their peers, who went above and beyond their job description to support the people in their care. There have been three winners since Matthew’s death."

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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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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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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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