A sister's story fuels this scientist

By Louise Kinross

Krissy Doyle-Thomas is a neuroscientist at Holland Bloorview. She's studying whether a brain-imaging tool that detects blood oxygen levels can identify pain in children with autism who use little or no speech. CBC profiled Krissy during Black History Month as one of 150 black women who have made a place in Canadian history for excellence in their field.

BLOOM: What led you into children’s rehab?

Krissy Doyle-Thomas: For me it was out of a need. My younger sister Eddie-Marie was born at seven months and there were some complications: she wasn't getting all of the oxygen she needed. She was diagnosed with global developmental delay when she was very young.

We were a young immigrant family trying to navigate how to get help for her. We were in and out of SickKids for a very long time, meeting with specialists to address her medical needs in addition to trying to understand her global delay. The lack of answers my parents had about how to best support her really impacted our family. 

I was connected to the frustrations and stresses my parents were feeling and that started my desire to learn more, and to be someone who has that kind of information to share. I initially wanted to become a medical doctor. But then I went to school for psychology and I discovered the brain during one of my courses and I said 'This is what I want to do.'

BLOOM: Some people look at the brain and don't want anything to do with it!

Krissy Doyle-Thomas: I'm intrigued by the mystery of it. The fact that one organ controls everything we do. Of course we have other vital organs, like the heart. But the way our understanding of self and the way in which we operate sits in that one place, for me that is intriguing. I wanted to learn about the thing that makes me most like myself. And then when things go wrong, how can we address that? My passion is on the research side. I'm passionate about using the information I have to help find solutions for treatment, and also to educate people about the brain and the disorders I study.

BLOOM: How is your sister doing now?

Krissy Doyle-Thomas: She's fantastic. She's grown into a very independent, mature woman. She's married and has a little girl. She's got a knack for computers. My dad is an accountant and she supports his business. She knows how to handle data. She's developed a life that is who she wants to be. But growing up she had a hard time comparing herself to her sisters, who are all now senior executives in the business world, or me, with my PhD. When she let go of that, she really blossomed in her own way.

What I learned was how we view success is a personal thing, it's individualized. When my parents finally came to terms with the fact that Eddie doesn't need to fit into the same mould that their other daughters do, that allowed Eddie to be who she really is. To accept herself and the 'wonderfulness' that she is.

BLOOM: Can you describe your research?

Krissy Doyle-Thomas: We're using a new brain imaging tool that is portable and inexpensive and allows us to image the brain and see changes in blood flow in response to a task or state. When neurons are active they require oxygen and blood flow goes quickly to the active areas. As oxygen is released the signal changes and we can see where in the brain is active. 

We want to see if this can pick up the pain response in kids who have autism and are non-verbal. Our clinical partners see these kids in our psychopharmacology clinic. They're referred for aggression and irritability, but we don't really know what might be driving this behavioural response. Often times later on the clinicians discover medical conditions that are very painful. We're trying to create a tool that could be used in the clinic to help identify kids who may be experiencing pain and can't tell us.

BLOOM: What's challenging about the work?

Krissy Doyle-Thomas: Understanding the cortical pain response in itself is a challenge, in the absence of emotion. How are we going to think about pain when physical and emotional pain may happen in tandem? A lot of times both need to be treated. We want to know if we can get a reliable signal that will warrant medical intervention.

BLOOM: Why did you choose to study autism?

Krissy Doyle-Thomas: I really wanted to study global developmental delay, but when I was in school there weren't many researchers looking at that. I thought autism is another developmental disorder, if I start there, perhaps I can learn generalizable skills. Then when I'm an independent researcher, I can branch out. My end goal is to make my way back to studying global developmental delay.

BLOOM: What do you love about your research?

Krissy Doyle-Thomas: I love that it provides answers to families, not definitive answers, but more information that helps families understand the brain and autism and will eventually be translated into care and treatment.

BLOOM: Autism is a controversial area because many autistic adults are opposed to the idea of cure and want others to value their way of thinking.

Krissy Doyle-Thomas: I agree with them. It goes back to how I feel about my sister. When a person figures out their identity, we embrace that. If someone wants to embrace their autism as who they are, we need to be respectful of that. And if someone wants to treat their autism, we have to respect that. It needs to be individualized.

BLOOM: You were talking about what you love about your job.

Krissy Doyle-Thomas: I meet really cool kids and they're all so different and I appreciate that. I think diversity is very important. You meet all kinds of people with different abilities, ethnic backgrounds, genders. Everyone brings something to the table. You learn so much about being a human being by walking in the halls here. That's what I love about being in an academic health centre. It helps me to have a new outlook on life—be who you are, and let others embrace that. 

BLOOM: There's a lot of literature on how having a sibling with a disability affects kids. While some is very positive, other research shows brothers and sisters can find the complexities that disability adds to a family to be challenging.

Krissy Doyle-Thomas: I did find it challenging, yes. I always wanted to help, and when we couldn't find answers for my sister, I felt frustrated. She didn't always have the insight to know she was different, she just knew she was being bullied. My parents tried to put these protective parameters around her and she pushed against that. We didn't understand global developmental delay and what she could or couldn't do, and she wanted that independence. It was hard for her to understand why she couldn't do the things we were doing.

BLOOM: There's a group at York University doing research on the barriers facing immigrant moms of children with developmental disabilities. You mentioned you were an immigrant family. 

Krissy Doyle-Thomas: We moved from Trinidad to Toronto when I was nine and my sister was two.

BLOOM: This York group held a workshop here and the diversity in the room was unbelievable. There were a number of support groups that I had never heard of: a group for Muslim moms raising children with disabilities and another for Chinese moms and another for Somali moms. There were also lots of service providers from outside Holland Bloorview. But there were only a handful of our staff there. They were talking about how challenging it is to get the services your child needs when you don't speak the language or don't understand how to advocate in this culture.

Krissy Doyle-Thomas: We spoke English, so that wasn't an issue for our family, it was more not knowing what the best treatment was and how to get it.

But there was a situation recently that opened my eyes in this area. When the CBC story on black women came out, we did a series of photoshoots in groups of about 30 to 50 women. We all shared about what we did, and when the others found out I was a neuroscientist, they had so many questions about their own kids and other family members. Some had been diagnosed with autism or had a concussion or something else. They kept saying 'You have the answers our community needs to hear.'

It made me realize we have to go out into the community, instead of saying 'come to us.' Keeping information within the four walls of my workplace is not what my community needs. Information can be received in a different way if the person giving it understands where you're coming from culturally. So the families say 'Okay, I get this, they're speaking my language, in more ways than one.'

BLOOM: Have your thoughts on disability changed since you came here?

Krissy Doyle-Thomas: Definitely. It's about appreciating people for who they are and not holding anyone up against any one measuring stick. It's about embracing the person and allowing that person to shine for who they are, without biases, or without them having to fit into a mould. This organization opened my eyes to that. It wasn't an aha moment. But the culture here has become my culture, and changed my outlook.

Krissy Doyle-Thomas's research is funded by Holland Bloorview's Centre for Innovation.

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Mailbag: What you said about stunting a disabled child's growth

You voiced strong opinions on a BLOOM post about a New York Times Magazine story on parents who choose to medically halt the growth of their children with severe disabilities (photo above from The New York Times). 

The argument for the treatment, done through surgery and hormones, is that a child who remains tiny can be more easily cared for by parents and siblings at home, and included in activities that become impossible as they get taller, heavier and harder to lift. In addition, parents believe girls will be less likely to be sexually assaulted as adults if they don't grow breasts, and want them sterilized to avoid menstrual pain. 

In the article, an ethicist noted the treatment was only for children with "the lowest cognitive function." I thought the implication was that children with the lowest intelligence wouldn't experience the pain, in the case of a girl, of a hysterectomy and mastectomy, in the same way other children would.

You corrected me and said that pain was not the issue. Instead, the treatment is thought by some to be warranted for children with low cognitive function because altering their size won't compromise or violate their sense of identity in the way it might a child with average intelligence.

Here are a few of your edited comments:

I feel a lot of sympathy for parents who can envision a time wherein their small child grows up to a 125 or 150 or 200 lb person. I can see that they would agonize over what they see as a diminished quality of life. And to the parents who choose this—their ability to move their child IS of paramount importance, as indicated by the article.

I think in the ideal world there would be supports in place that parents can care for full-grown adult children at home—and in public—if they so choose. But that isn't what happens. And as such, I really can't judge these parents who decide that this is best for their child. These are just parents who are trying to do the best they can.

Adrienne

As you know I dedicated a whole blog to this issue. Like others have commented here, I did not read anything about pain being the issue. The issue is cognitive ability or disability and that it cannot be assessed in individuals who do not have the physiological ability to express their mental state. 

In any case, if a woman in a coma is sexually abused by, say, a hospital worker, is it still rape? Is it still a crime? Is it okay to provide minimal care to our elder population with dementia because they don't know what's going on anyway? That's the crux of the problem; supposedly these children don't know what is being done to them, so it's okay to do it. G.A. is the most appalling violation of human rights that I have ever heard of.

King

This issue raises many concerns [and relies] on several contestable premises.

First, the use of the child`s intellectual capacity as a criterion for justifying these interventions is quite perplexing. As long as a child has consciousness, he/she should be able to experience pain. Moreover, impaired cognitive function could in fact pose greater concerns rather than less, as it may compromise the child’s ability to understand the discomforts that he/she is experiencing; that the “treatment” is supposedly beneficial for him/her. 

Second, using these medical interventions to facilitate basic physical care of the child seems like a stretch of the child’s best interests standard. This seems to impose a disproportionate burden on the child—to render the child physically easier to care for—when household adaptations and assistive devices could be used instead. 

Finally, there seems to be an under-recognized breach of basic respect for the child’s dignity, by treating his/her body in simple mechanistic terms, using convenience as a rationale for bodily alteration.

Franco A. Carnevale, RN, PhD (Psych), PhD (Phil) 
Pediatric Ethicist, Nurse, Psychologist
McGill University

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What does IQ have to do with stunting a child's growth?

By Louise Kinross

You may have seen this story about parents who choose to medically halt the growth of their children with severe disabilities through surgery and hormone treatment. It's in this weekend's issue of the New York Times Magazine.

The argument for the treatment is that a child who remains child-sized can be more easily cared for by parents and siblings at home, and included in activities that become impossible as they get taller, heavier and harder to lift. In addition, parents believe girls will be less likely to be sexually assaulted as adults if they don't grow breasts, and want them to avoid menstrual pain. 

What struck me as odd in the article was that the ethicist from the children's hospital that published the first case in 2006, with a child known as "Ashley," notes that treatment is only recommended for children "with the lowest cognitive function." 

This is echoed in the article by parents whose children have had the procedures. One says: "She's going to be a baby all her life in her brain."

The ethicist cautions that intellect can be hard to read in a child with severe disabilities who can't communicate: "...I do think you need a fair amount of certainty there," he says.

But what does low IQ mean for a child going through these procedures?

To clarify, halting growth for girls involves a hysterectomy and mastectomy, usually between the age of three and six. This is followed by about three years of estrogen treatment that speeds up bone age and triggers the early closing of the child's growth plates. "A careful monitoring of calories" is also required, the article notes. When begun at a young age, future height can be reduced by one to two feet, and weight by 100 pounds.

The implication seems to be that a child with the lowest intelligence will not experience the surgeries and hormone therapy in the same way a child with typical intelligence would. 

And why would that be?

The implication seems to be that a child with low intelligence doesn't experience pain. 

It reminds me of that time when the medical profession claimed that babies didn't feel pain (proved oh so wrong, scientifically, since).

What I find troubling in this article is the suggestion that intelligence is the barometer by which medically stunting height and weight through surgery and medication is judged ethical. 

Does this mean that if a person has normal intelligence, then suffers a severe brain injury that requires 24-7 care, it's ethical to surgically alter their body to make it lighter for caregivers to lift? 

Does low intelligence or brain injury make a person less likely to feel surgical pain? 

I didn't know the answer, but I found the assumption troubling.

So I asked two of our staff at Holland Bloorview. 

Peter Rumney is physician director of rehabilitation and complex continuing care at Holland Bloorview and an international expert in acquired brain injury in children. 

"Not usually, no," was his answer.

"Absolutely not," is how Nick Joachimedes answered the question.

Nick, as a nurse educator at Holland Bloorview, led research to address literature that showed pain was under-recognized and under-treated in children with disabilities. "How these children show their pain may be different," he says. "But they are certainly as susceptible [as] anyone else." 

I don't, for a second, question the physical hardship of caring for a child who will grow to adult size while parents age. This is a massive issue. We know from research that parents of kids with physical disabilities are at much greater risk of all kinds of physical injuries and chronic health problems.

But to argue that altering a child's body with surgery and hormones to make care easier is justified because they don't experience pain is plain wrong.

By the way, the New York Times article notes that Ricky, the boy pictured in the magazine's photo above, received estrogen treatment for three years until his toes started to turn purple (thrombosis is a side effect). He also developed breast tissue. His doctor suggested his breast buds could be surgically removed for cosmetic reasons but his parents felt this was unnecessary. 

What are your thoughts? 

Photo by The New York Times

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Hospitalized: A poem by Jadine Baldwin

Jadine Baldwin (with her mother) is a 15-year-old student who's been hospitalized at Holland Bloorview since she had surgery to straighten her spine way back in November. "I'm not going to sugarcoat it," she says. "This has been the most painful surgery I've ever had." 

Jadine says she uses writing as an outlet for her emotions. "I write when I'm happy, sad, angry or hungry."

It's also a great distraction from pain, she says. "When you're in pain you want to find stuff that makes you feel better, even if just temporarily. Writing makes me forget that I have pain for the moment." 

Jadine's favourite writer is young adult author John Green, who wrote the bestseller The Fault in Our Stars. "He's astonishing," she says. "He doesn't mess around." This is Jadine's poem about what it feels like to be a teenager going through rehab in hospital. Stay tuned for more of Jadine's work.

Hospitalized: A poem by Jadine Baldwin

Being in the hospital as a teen one minute feels like forever

Being in the hospital as a teen pain demands to be felt

Being in the hospital as a teen you understand that life is too short to be unhappy

Being in the hospital as a teen means that physio is not a choice

Being in the hospital as a teen opens your eyes to who your real friends and family are

Being in the hospital as a teen makes you appreciate the little things in life

Being in the hospital as a teen introduces you to so many people who want to see you succeed

Being in the hospital as a teens helps you make memories and friends to last a lifetime

Being in the hospital as a teen where food is the only flaw is not too bad

Holland Bloorview is the place for healing (in any shape or form) at its best.

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When a clown is the best medicine

By Louise Kinross

Lorrine Peruzzo anticipated the daily unpacking and packing of special dressings in her daughter Katie’s pressure sores with dread.

Katie, 12, who was at Holland Bloorview following a hip replacement, “had to be restrained and she screamed the entire time and had a complete meltdown,” Lorrine remembers. “We couldn’t keep doing that.”

Enter Holland Bloorview’s therapeutic clowns, trained professionals who engage children with physical and emotional comedy and music, letting the kids direct the action as a way of empowering them.

The prescription, in Katie’s case, came in the form of Dr. Flap—known for her trademark flight cap—whose body had been playfully wrapped like a mummy, including her ukulele, in masking tape. While nurses attended to Katie’s dressings, her job was to free Dr. Flap from her bindings.

“It was hilarious,” Lorrine recalls. “Katie acted like she didn’t even know she was having the dressing changed. Everyone was shocked and amazed. It was an amazing distraction.”

Lorrine says that the presence of the clowns was equally therapeutic for her. “I don’t know if people realize this, but the clowns are not just for the kids. Whenever Katie’s in pain my stress level rises too, because I’m powerless to stop the pain. The clowns have the ability to bring that stress level down for her, which brings it down for me.”

Our therapeutic clowns also played a role in supporting Katie during her therapy in the rehab gym. “Her physiotherapist was getting her up and moving but it was very painful. You could see it in her face. She was always tense, always upset.”

During one particular exercise Katie needed to stand and rock back and forth on her feet. She refused.

The clowns Dr. Flap and Nurse Polo assisted. “Dr. Flap played her ukulele and Nurse Polo took Katie’s hands and started rocking her back and forth, like she was dancing. It totally took her mind off the painful physio exercise. She went from being ‘No, no!’ to ‘I’m dancing with Nurse Polo. This is fun!’"

In 2010, scientists in the Bloorview Research Institute conducted the first study to measure the long-term physiological effect of therapeutic clowns on hospitalized children. They showed that even a child in a vegetative state and those with profound disabilities respond to the red-nosed performers with changes in skin temperature, sweat level and heart and breathing rate.

Jamie Burnett, one of the clowns involved in the research at the time, explained it this way: “When children come in here they lose all power. They lose control of their bodies due to some illness…and they have doctors telling them what to do, and parents telling them what to do. We allow them to come to a space of complete freedom and imagination…and go wherever they would like to go and that, I think, is so essential, not just in terms of being a human being, but in terms of becoming a healthier person. I am always amazed at the courage they show and I am always amazed at the beauty of their spirits…”

Please consider making a donation to our therapeutic clown program which is supported by Holland Bloorview Kids Rehabilitation Hospital Foundation.

 

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Nick knew how to take the pain away

By Louise Kinross

When I first got to know Nick Joachimides (above centre), it was in his role as a nurse educator at Holland Bloorview.

Nick was part of a research study to address a growing body of literature that suggested pain was under-recognized and under-treated in children with disabilities. The study aimed to shift the focus from treating pain in our kids to preventing it.

This was of great personal interest to me because my son had just had a major hip and knee surgery that wasn't successful: the hardware put in his hip had pulled out of the bone, taking a chip with it, he was in unbearable pain, and he had to have the identical surgery a second time to correct it.

I was an emotional wreck when my son came to Holland Bloorview in a body cast following this second surgery.

But I had one huge advantage. Nick worked on the unit my son was on.

Nick was convinced that by proactively treating pain with medication before it spun out of control, it could be kept at bay. He was implementing a number of best practices that included pain assessment tools to track pain; anticipating and treating pain prior to therapy or procedures; making pain management the responsibility of the entire rehab team; using distraction and relaxation techniques; and educating families.

Nick was caring, calm and unflappable.

When my son's cast had to be cut off unexpectedly because his wounds continued to ooze, Nick was part of the team that supported my son in the treatment room pictured (in the photo above he is with a different client).

Children need to feel safe in their hospital rooms, so painful or anxiety-provoking procedures are done in a separate room at Holland Bloorview.

I expected cutting the cast off would be traumatic for my son. I was also concerned that it might result in the hardware pulling out of his hip again. "He can't take another surgery," I remember telling Nick, which was really my way of saying "I can't take another surgery!"

I was astounded when I came to the treatment room and found my son lying on a bed, completely relaxed, grinning. Nick and a number of nurses and child-life specialists were circled around him, as was the orthotist who was cutting off the cast.

Fibre-optic lights were draped over my son, blinking peacefully, and his favourite Star Wars movie played on a large-screen TV above. I hadn't asked for any of these things. Because staff had gotten to know my son, they knew he adored Star Wars. They had taken the time to think about what might soothe him and take his mind off the medical procedure.

There was only one person visibly stressed in the room: me. One of the child-life specialists suggested that it might be better for everyone if I went back to my office and they called me when the procedure was over. Ha ha! She was right.

When the cast was removed they found my son had pressure sores that needed to be treated. Nick is an expert in wound care and he always seemed to be able to change my son's dressings with a minimum of pain.

Something I learned when my son became an inpatient here is that nurses are the heart of the care we provide. They're the ones who are with you and your child for the most amount of time every day and night. They're the ones who problem-solve with you when your child's pain is bad. They're the ones who make handmade heating packs to soothe your child's aches. They're the ones who are there when everyone "leaves" for the weekend. They're the ones who give you a hug when you start to cry. They're the ones who make being in hospital bearable.

Two years ago I got to interview Nick about how he got into children's rehab. I was moved by a story he told about the deep connection he made with one inpatient boy on our complex-continuing care unit. "They want to have fun, they want to be treated like children," he said. "They need people here who can demedicalize the environment." One of the ways he did that was by concocting practical jokes with this boy that they'd play on other nurses. "We'd both laugh when we pulled off a good one," he recalled. 

In the last few years Nick moved out of frontline nursing and worked with people in and out of Holland Bloorview to make it a leader in patient safety and infection control. 

When I heard he was going to a new position at Bridgepoint Active Health Care I was so sad. Holland Bloorview and Nick went together. But then I learned he was returning to clinical care, as an advanced practice practitioner for wound care. I could picture the immense trust he would engender in the patients and families he was going to, the way he would work to take away their pain and put them at ease. And it totally made sense.

"Do you remember a nurse called Nick?" I asked my husband.

"Not really," he said.

"Come on," I said. "He helped Ben with his pressure sores."

"Oh him! Yes, he was very gentle and kind."

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Study flags pain in kids with cerebral palsy

One in four children with cerebral palsy has moderate to severe pain that limits activities, according to a study published yesterday in Pediatrics.

Caregivers filled out a survey and doctors reported the presence and cause of pain in 252 youth aged three to 19 in this Holland Bloorview study.

Hip pain and tight muscles were the most frequent causes of pain “and have specific treatments,” says lead researcher Dr. Darcy Fehlings, physician director of the Child Development Program at Holland Bloorview and clinician senior scientist at the Bloorview Research Institute.

For example, regular hip x-rays can identify partial hip dislocation (called hip subluxation), which can be treated with stretching, hip abduction bracing, Botox and orthopedic surgery, before complete dislocation and chronic pain develop.

“A number of treatments exist for dystonia, ranging from oral medication, [Botox], intrathecal baclofen pumps, and, more recently, deep brain stimulation, to help prevent children from becoming ‘stuck’ in painful postures,” the researchers say.

The main cause of pain in 10 per cent of the children and youth was constipation, which can be effectively treated with the laxative polyethylene glycol.

"This study underlines the importance of asking every child with cerebral palsy about their pain levels," says Dr. Melanie Peller, a fellow in developmental pediatrics at Holland Bloorview. "This can sometimes pose a challenge for children with communication limitations, which makes a systematic pain assessment plan crucial."

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Grace

Thank you Elizabeth, Ellen, Lianna and Sherry for your comments on Ben's homecoming.

I pulled my first all-nighter in years last night: Ben was in terrible pain. He had been weaned to tylenol and by the time I realized he was crashing and went to get the strong pain medication filled, it was too late.

At one point last night Ben started thrashing around in his cast, trying to roll onto his affected leg. We were frightened he would hurt himself and decided to remove the cast. I neglected to mention in my previous posts that Ben didn't need to be in his body cast medically -- for the purpose of bone healing -- but to prevent him from placing any weight on his affected leg. The surgeon made the cast a removable, clam-shell one and told us if we could be sure he wouldn't put weight on his leg, we could take it off.

Ben's pain continued without the cast and as the early morning hours ticked by I started agonizing over whether removing it was the wrong decision. I spoke to the orthopedic resident on call, but despite his reassurance I was fit to be tied. I e-mailed the surgeon, and imagine my relief when I received this message back from him at 9 this morning:

There is nothing wrong with removing the cast, and it's also normal to still have pain. Just having the incisions alone is painful, and they will hurt when he moves, and he can move even in the cast. If he is still uncomfortable, call the residents on call and they can give you a prescription for a stronger pain medication.

It's normal to worry, and it's normal to have pain after this kind of surgery. It's no problem for you to email me or call the residents on call with any questions. If he has more problems today let me know, but if not, call my office and let Kim know on Monday how he is doing.

I was so relieved, I cried, and I suddenly felt capable that I could support Ben through the pain. It was natural that he had great pain (not a reflection of anything we were or weren't doing), and hopefully it would get a little better, everyday. We were acting in Ben's best interest when we removed the cast because we were afraid he would hurt himself.

I went for a walk with my younger son and it was bright and sunny and everything was in bloom, particularly the hydrangeas. I felt like I had been touched by grace.

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Music serves to soothe the pain

No child likes needles, and coaxing kids to remain calm while receiving Botox injections to relax tight muscles caused by cerebral palsy was stressful for parents in Bloorview’s spasticity clinic.

But an innovative program that combines music, visual arts and medicine is reducing children's anxiety, helping them find creative ways to cope, and cutting procedure times in half.

Armed with a guitar and a variety of drums, rattles and art supplies, Bloorview music therapist Andrea Lamont (above) and artistic co-ordinator Sarah Dobbs meet with families before the procedure to “assess what type of music will work well to distract this child and what pieces are soothing – whether there's a familiar lullaby mom and dad sing at home,” Andrea says.

Dr. Darcy Fehlings, the developmental pediatrician who leads the clinic, says the music intervention reduces anxiety in most children before the procedure and decreases injection pain in about 50 per cent.

Before the procedure, “they have fun, find instruments they like, make choices, make mom and dad play, conduct the music, and feel more in control,” Andrea says.

Children then take the instruments as companions when they get up onto the clinic bed and lie down to receive injections. “We let them know that it's okay to bang the drum hard when they hurt,” Sarah says. “Normally when a child is in a medical environment and makes a lot of noise, they're told it isn't good behaviour.”

Andrea, who sings and plays the guitar during the procedure, matches the child's emotions in her music. “I watch Dr. Fehlings and as the needle goes in, I increase the tension by going from regular sounding music to something like the Spanish or Middle Eastern idiom, or adding volume or texture and more tension in my voice. From a therapy point of view, when you're willing to match the child where they are, they feel the music is a partner through the procedure. It's telling the client 'I hear you and I recognize your pain, and I'll scream along with you.' When the needle is removed I bring down the tension and sing soothing, calming pieces and the parents give the child a hug.”

While Andrea sings, Sarah supports children by offering them ways to express themselves with a drum or rattle. “A child may feel trapped by their vision of how the procedure will be," Andrea says. “They may tell themselves: ‘It was terrible last time and I'm going to be in pain and there's nothing I can do about it.’ We help open the blinders by offering creative activities that promote problem-solving: ‘I can't do anything about the pain, but Sarah is offering me the shaker. I can do something. I can hold onto something and I can make the bells go.’”

Megan Perron, a nurse in the clinic, says the procedure time of 10 minutes has been cut in half since the introduction of “the music ladies. When the anxiety level is down and the child is cooperating and less scared, we can get the injections done in five minutes. They can hit the drum or bang the symbol to get their frustration out, and they know it’s acceptable to be upset by the whole process. They may still scream, but with the music, they lie still. The parents see the difference. When the child is calmer, everyone is calmer.”

A favourite instrument is a large ocean drum with a pattern of fish on the outside fabric and a clear plastic top. Inside are ball-bearings that move and swish as if in water when the drum is moved. “You can increase or decrease the intensity, so it sounds like a soft lapping of water or a big rush of waves,” Sarah says.

She notes that the arts are accepted as “an integral medical tool” at Bloorview and are increasingly used alongside traditional medicine and therapies. “In the 1950s the World Health Organization said that health had to do with the wellbeing of body, mind and spirit. The clinicians on the medical side can take care of the body, the child's physical needs. But the mind and spirits, those are fed by the arts.”

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