In nursing 'everything good comes from the heart'

By Louise Kinross

Shevonne Thatham is a registered practical nurse at Holland Bloorview working with children who have complex disabilities and use ventilators to breathe. She just won the DAISY award, which recognizes a nurse that uses a strengths-based approach and combines top-notch clinical skills with deep connections with children and families. “Families like my realness,” Shevonne says. “A lot of people say I’m the Oprah on the unit, because people open up to me. I’m able to make them feel welcome and warm.” 

BLOOM: How did you get into this field?

Shevonne Thatham: I never had a thought about working in pediatrics until I did my consolidating year on a student placement here. I knew I wanted to be on a respiratory unit, and I landed here, and the kids just captured my heart. Often there weren’t parents at the bedside, and there was a sense of urgency, that these children needed care, love and compassion. This is my calling.

BLOOM: How did you choose nursing?

Shevonne Thatham: I was inspired by my mom. My mom is a practical nurse working in geriatrics. I used to go with my dad to pick her up on evenings, and we would go a little early so she could introduce me to her clients. I was always that caring person that wanted to help out. I was a little kid listening to their stories about how they got there. That sparked a flame inside me that never faded.

BLOOM: What’s a typical day—or night—like for you?

Shevonne Thatham: I do rotating shifts. I like nights because you’re the nurse, the respiratory therapist and the doctor—you do it all. The clients I work with require total care. In the morning, we prepare their meds, administer their feeds, and get them up in their chairs. They may wear devices like ankle-foot orthoses. I’m their hands, their feet, their eyes, their ears. Then, I’m with a child for the day, whether they go to therapies, school or off-site. They’re complex, so I support any medical needs they have. I’m their medical parent. For children who have a tracheotomy, they may need a suction to maintain their airway. I ensure their [feeding] tubes are running. 

BLOOM: What is it like working with this population?

Shevonne Thatham: It’s about empowering the families and giving them that hope and courage that their child will make it home. Some of these kids were diagnosed at birth, so it was life changing for their parents. It’s giving them that hope that everything is okay, despite their differences. You can still have a life and a family.

BLOOM: You must develop very deep connections with these kids.

Shevonne Thatham: Yes. They can’t communicate with me, because many of them are non-verbal. But I know exactly what’s going on with them. Non-verbal communication is key, and learning to read them—whether it’s an elevated heart rate or a grimace in their face.

BLOOM: What’s most challenging about this work?

Shevonne Thatham: Advocating for someone who is non-verbal. Every child is different. We’re at the bedside and we’re the first level of contact with these kids. Sometimes it’s hard for physicians, who are more focused on the medical, to understand something may be about comfort. When I advocate, it’s not what I want, it’s what the client needs.

Another challenge is that when the family comes to Holland Bloorview, the parents are in that grieving stage. They’re dealing with a lot of anger and emotions. With families, sometimes I need to be a social worker, which is not my field. I need to think about how I say what I need to say in the appropriate way, that is caring and compassionate as well. Sometimes it’s sitting with parents and if they’re crying, I’m crying.

BLOOM: What are the joys?

Shevonne Thatham: There’s so much. Doing what I love to do. Seeing a smile on a child’s face or parents saying thank you. Knowing that I’ve made a difference or that I’m helping to better their chances of going home quickly. Advocating. Teaching families and teaching clients who are able to do their own self-care. Aiding in their everyday life.

BLOOM: What emotions come with the job?

Shevonne Thatham: Frustration. It’s hard to understand, sometimes, what is going on with a client. Happiness. Moments of happiness. Moments of anger, because why? You just think ‘Why is this happening to these families?’ Being able to be a person in their lives, so when the family comes back here later for respite, the child remembers you, and you know you left an imprint in their life.

BLOOM: How do you manage those emotions?

Shevonne Thatham: I’m a spiritual person, so I would pray for my families and for myself. I bring everything to God. I also use music, driving home, to debrief.

BLOOM: What have you learned from families?

Shevonne Thatham: They’re taking on a new job that they’ve not signed up for, or gone to school for. And in the end, they’re able to be the parent, the nurse and the doctor for their own child. Families have taught me that they’re strong people.

BLOOM: If you had to give yourself advice on your first day, from where you sit now, what would you say?

Shevonne Thatham: Put your heart into it. Everything good comes from the heart. If this is where you want to be, show it, and it will manifest a beautiful outcome.

BLOOM: If you could change one thing about children’s rehab, what would it be?

Shevonne Thatham: I think we’re going in the right direction, and since I got here there are more opportunities for kids who have a trache to do normal daily activities. I’d like it if we had a really shallow end in our pool, because despite having a trache, a lot of our kids want to be in the pool. It would be great if we had some sort of protection for the trache, so that they could go in the water. 

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All children have voices, if only we listen

By Louise Kinross

Bioethicist Franco Carnevale recalled the assumptions he held about families caring for children using ventilators at home, prior to launching a study of them. “Our preconceptions going in were that this was an intrusive, aggressive intervention and we needed to rethink the hardships we were imposing on these families,” he said.

Franco, a clinical ethicist, nurse and psychologist at McGill University and its affiliated hospitals, was speaking at Holland Bloorview’s Pursuit Awards.

“From our critical-care lens, we had made prejudgments about what kind of life was worth living,” he said. “We went into these families’ homes looking to create lists of hardships.”

Instead, while learning about the real challenges these families faced, they also heard about the joy in their lives. “They talked about the interplay between difficulties and rewards,” Franco said. “Parents did not want us to talk about their child’s life as a burden.”

Perhaps most interesting was the meaning that a four-and-a-half year old gave to her BiPAP machine. A BiPAP delivers pressurized air through a mask so that a child can take bigger breaths when his or her breathing muscles are tired or weak.

“My ‘pap’ makes me happy,” the child said. “I really like my pap. The pap is good because it helps me to breathe.”

Accordingly, the resulting journal paper was called Daily Living With Distress and Enrichment: The Moral Experience of Families With Ventilator-Assisted Children at Home. BLOOM interviewed Franco in 2011 about the study.

Franco noted that when we think about ethics related to children living with complex conditions, we think of concerns voiced by health-care professionals. “These are important,” he said.

But we have little data based on the voices of the children living with these conditions, and their families. “So little is known about the ethical dimensions of their everyday lives,” Franco said.

He noted that historically, children were viewed as a family’s possessions, not as human beings. When their value was considered, it was in the context of whether they could make productive contributions as adults. The voices of children continue to be minimized in health care today, he said.

Franco proposed a paradigm shift from thinking about “pediatric” ethics to “childhood” ethics. “The tone of pediatric ethics suggests we are starting with the concerns of health-care professionals. What we need is a field of childhood ethics that is centred on the moral lives of children. We need to develop a new philosophy, or outlook, to understand human experiences more richly. We need to be able to understand what is most morally meaningful to children and families in their everyday experiences.”

Franco noted that an emerging “sociology of childhood” will take an interdisciplinary view of how we understand children, drawing on history, philosophy, sociology and anthropology.

The new field moves away from the “deficit orientation” of some dominant forms of developmental theory, which look at how removed the young child is from the ideal prototype of humanity—the adult.

“Children have agency,” he said. “They have the capacity to be active, moral agents who have preferences, views and outlooks on what is meaningful to them.”

Franco said the field of childhood ethics would favour qualitative approaches to understanding children’s experiences, voices and agency. “These are hard dimensions to capture through structured, measurement approaches,” he said.

Rather than a psycho-social approach to listening to children, which aims “to comfort or reassure,” Franco said, “we need to develop a way to interpret how the wishes, preferences, hopes and aspirations are ethically significant to a child.”

He noted that ethics in health is based on the idea of treatment that serves a child’s best interests. “But how do we define best interest, and who gets to define it?”

Franco said he and his fellow researchers got their definition wrong before they studied families living with children with ventilators at home. “’Best interest’ needs to be linked to what is morally meaningful to a child,” he said.

In answering a question about the notion of “giving a child a voice”—which is how the media often frames stories about voice technology—he said he doesn’t use that phrase. “All children have voices,” he said. “We haven’t been listening.”

In an e-mail exchange after his talk, he recalled working as a pediatric nurse in the 1970s, when the medical theory was that newborns didn’t feel pain. “I recall many times holding down newborns as tubes were inserted between their ribs, or catheters into their major veins. These babies grimaced and squirmed. Parents were horrified, although they rarely witnessed this, because they were forced to step out during these procedures. These babies were vividly expressing distress, but we discounted their ‘voices’ because we didn’t understand them.”

Franco says the same holds true for any child who doesn’t communicate in conventional ways. “In many situations, parents are optimal interpreters for these voices.”

Franco Carnevale is principal investigator of VOICE: Views On Interdisciplinary Ethics. You can follow VOICE on Twitter @childethics. Pictured above is Zoey Faith with Holland Bloorview nurse Joy Zergara.

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Falling asleep on a home-care night shift spurs nurse's research

By Louise Kinross

Krista Keilty is a nurse practitioner and visiting scholar at the Bloorview Research Institute who studies parents who care for children who require a “mini-ICU” at home. These children have complex medical problems, use ventilators, and require round-the-clock observation. Krista has cared for these children and families as a nurse at SickKids—where she taught their parents the skills to transfer home—and as a home-care nurse.

In 2015, Krista published a study that found parents of kids who use ventilators at home risk their own health because they struggle to sleep—even when a nurse is in the home. More recently, she’s interviewed parents and home-care nurses to study the factors that contribute to poor parent sleep. She works at SickKids and Holland Bloorview to improve the care and training families of children with ventilators receive as they move from SickKids to Holland Bloorview, and then home.

BLOOM: How did you get into this field?

Krista Keilty: I came to pediatric nursing straight out of undergrad. It was my favourite clinical placement. At the time, I was living in Fredericton and there were very few jobs in New Brunswick. But SickKids was recruiting across the country and set up in a hotel room in Fredericton. In less than an hour, they had me sign a contract and I agreed to move from Fredericton to Toronto, to a hospital and city I had never visited.

BLOOM: Wow. What was your first job there?

Krista Keilty: I was a staff nurse on the Ear, Nose and Throat (ENT) floor, which included a constant-care room for children with chronic complex needs—most of whom had a tracheotomy. I became very interested in being one of the primary nurses training families in preparation for their move home. We didn’t have respiratory therapists then, so nursing had a prominent role.

BLOOM: Given it was your first job out of school, were you nervous to be working with children who required such a high degree of care?

Krista Keilty: I don’t remember being nervous about caring for children with traches. I remember my eyes being wide open in a very large organization, with lots happening and so many opportunities in front of me.

I was warmly embraced by a number of really caring, longstanding ENT nurses who mentored me with a lot of enthusiasm. I learned that trache skill-set early in my career. In the day they called us ‘trache-trained,’ and we travelled around the building as needed.

BLOOM: What is your research focused on now?

Krista Keilty: Understanding the experience of families providing comprehensive medical care for their child at home has been the foundation of my career. Fast forward many years, my research focus is building a program that examines the experiences and outcomes of caregivers when children depend on technology and require constant observation. If a machine were not to function, there would be a negative outcome for the child.

BLOOM: Two years ago we did a story about your study showing parents of children who use ventilators at home are sleep-deprived, and this puts them at risk for physical and mental health problems. Did that study lead to any policy changes that enable families to get more nursing hours?

Krista Keilty: Not a lot has changed, except that everything has changed. With the community care access centres (CCAC) moving to the local health integrated networks (LHIN), there is interest in the LHIN looking at new models of integrated care and funding packages for pediatric home care. At least two LHINs, including Toronto Central, have tested self-directed funding, and the evaluations are pending. A recent Ontario announcement suggests there will be movement towards families having more say about their care, but the details are pending.

Not much has changed in access to home-care nursing. Family voices are being heard better, but change to new ways of doing things is slow. Discharges are delayed while families wait for home care to be available, and once home, the amount of care received is often inadequate.

I think that targeting improvements in [parent] sleep and respite remains a priority. We continue to build evidence to plan an intervention around the sleep disturbance we’ve documented. I’m doing a follow-up study here at Holland Bloorview where we examine the perceptions of family caregivers and home-care nurses about the factors influencing sleep disturbance.

BLOOM: What have you learned?

Krista Keilty: We heard from families about the inability to turn off the switch of worry and vigilance, even when a nurse is in the home to watch the child. Whether we call that insomnia or constant vigilance, that’s one area of work that may lend itself to behaviourally-based interventions.

Another major finding was the use of personal technology to help parents monitor their child or monitor the nurse. Families describe nurses falling asleep often.

Parents may have a baby monitor visible at their bedside with the volume turned on. Or they may ask nurses to text updates on their child throughout the night, from the child’s bedroom to their bedroom.

We know the influence of technology on sleep is a public health concern in the general population, and it’s likely a large source of interference with caregiver sleep.

BLOOM: But if a parent is afraid the nurse may fall asleep, it sounds like there are good reasons to use a monitor.

Krista Keilty: Consistency, continuity and competency in the nurses is important. Nursing agencies have a real challenge filling these shifts.

Right now, the duration of shifts is not well aligned with sleep needs. If you only have six-hour nursing shifts but you need eight hours of sleep, you’re already clipping your sleep to provide the hand over to the nurse.

Another study we’ve submitted for publication examined the use of unregulated caregivers for a longer shift—so hiring nannies, university students and others who are not classically trained for the work.

We studied 20 families who identified and trained a provider around competency and the family’s values about how they would like the care provided. They used some public and some private dollars to pay them. We wanted to know if having an unregulated caregiver who worked a longer duration of shift was an acceptable way of supporting the families.

BLOOM: How did that work out?

Krista Keilty: The families didn’t communicate any safety concerns with unregulated caregiver use. They did speak about a large burden on them to identify, hire and train these caregivers. They didn’t always feel confident that they knew how to do that, and there was no formal support system to help them.

But they also told us they appreciated having them as part of their care team. They often fit in well with the families and, once trained, offered competent and compassionate care.

BLOOM: Can you talk about what it’s like to be a home-care nurse on a night shift?

Krista Keilty: We’ve asked nurses that question in our recent study. They tell us that the nature of the work is very difficult. It can be isolating and lonely. It’s not like working in a busy hospital at night, where you have colleagues who can help you stay awake.

Not only are home-care nurses working in isolation, but one of the instructions from many families is to work in the dark, so they don’t wake the child or the family. But being in the dark is the most major cue for sleep. In a focus group, I asked how many home-care nurses had fallen asleep on the job, and there was a lot of nodding in the room.

BLOOM: Can you tell us about your own experience falling asleep on a shift?

Krista Keilty: Early in my career, when I was working as an ENT nurse at SickKids, I was also employed by a home-care nursing agency. A number of us at SickKids and Holland Bloorview were moonlighting. We did this to support the families as they started to leave the hospitals with medical technology.

One day, I got a call late in the afternoon to do a home-care shift that evening. It wasn’t uncommon to get last-minute calls. That day I hadn’t worked at SickKids, but it was my day off, and I’d been at the beach. I was sunburned and tired and in no frame of mind to be staying up all night. I declined the shift—many, many times.

They kept calling back, and I felt a lot of pressure. Finally, the actual owner of the agency called me, and she wasn’t taking no for an answer. The shift was in Oakville and I’d never travelled outside of Toronto, since I was from New Brunswick. The owner told me to get on the GO train and she’d pick me up in Oakville and drive me to the house at 11 p.m. I’d be working with a family I’d never met, with a child whose care I wasn’t familiar with, in the dark.

The child was on the main floor of a large suburban home. I met the family at the door and they briefly went over the child’s care plan and showed me the equipment. The boy was asleep, non-verbal, and on a ventilator. The parents went off to bed and I did my initial assessment of the child and provided care for a number of hours.

Sometime between the hours of 2 and 4 a.m., which tends to be the witching hour for safety incidents related to sleeping on the job, because it’s the hardest time to stay awake physiologically, I fell asleep. The father woke me up when he heard the kangaroo pump beeping, from a distance, in this large home.

I was forever changed. I realized I’d let him down and put the child at risk by not being available to the child when clearly this was an alarm to be alert to. I failed to hear it. I tried hard to have a conversation with the family the next morning about it, but they dismissed me, and I’m sure they never wanted to see me again.

BLOOM: How did this experience change you?

Krista Keilty: I had to reflect on how the provider-family relationship was structured in such a way that I was postured to be the expert, when clearly, just the fact that I had the title ‘registered nurse,’ didn’t mean I was good enough that night. I was trained on the technical side for this child’s care, but I didn’t know the family and I didn’t have a rapport with them.

I was a caring, hard-working, professional nurse, so I knew I was probably one among many who had let the family down and posed a safety risk. And, importantly—I knew I had threatened that family’s ability to get respite in the future, even when a nurse was in the home.

BLOOM: Because they would be afraid it would happen again.

Krista Keilty: Yes. This was a pivotal story in my career that spurred the idea for my PhD study.

BLOOM: What do parents say is the greatest challenge caring for their child at home?

Krista Keilty: They continue to tell us that it’s the complexity of the health system—that navigating that system takes a lot of their time and energy. In another study, I looked at the ways families spend their time. The ‘case-management’ they did for their child was a large time consumer, and it was also the most stressful part of what they did.

That’s partly why I’m excited to be here in this role. I’m working on a quality improvement project to support the families’ transition from SickKids to Holland Bloorview and then home. I’m trying to smooth those processes, and we have families engaged to tell us what it needs to look like.

BLOOM: In addition to sleep deprivation, I saw a paper you wrote that talked about how having a child with complex needs at home affects the family financially.

Krista Keilty: Yes. We’ve documented that income levels of family caregivers are less than those of a community-based sample with healthy children. Family caregivers of children with medical complexity are under-employed at a time when many would be in their highest, income-earning years.

The burden, for families, has been documented, in terms of negative impact on income, depression and anxiety, and in work by Dr. Eyal Cohen at SickKids and others, even shorter lifespans in mothers due to premature death. These data spur me, and others, on.

BLOOM: What emotions do you experience working with these families?

Krista Keilty: The gamut. I've learned that I'm highly empathic to the emotions of those in my environment. Given families can be sad and angry at times, then I find I can feel this way, too. Providers can be angry, or at least highly frustrated. But instead of feeling downcast, I most often feel happy and excited for what is possible. Families frequently experience uplifts and share their joys and hopes, which I find contagious.

They are very very thankful when their care is compassionate and supportive. Clinical and research colleagues are also energizing. I'm a big believer in the power of sleep. I need a lot of it. And it helps me get up every day with the will and ability to take on new challenges and cope with whatever comes my way. And, of course, a walk in Spiral Garden is always good for the soul.

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When parents leave the unit 'they're incredibly capable'

By Louise Kinross

Dr. Andrea Hoffman is a developmental pediatrician who works with children with complex medical problems on our inpatient units and in our feeding and neuromotor clinics. She was hired in 2013 after finishing her developmental fellowship here. She’s also a black belt in karate who first came to Holland Bloorview as a volunteer.

BLOOM: What led you into this field?

Andrea Hoffman: I started volunteering at Holland Bloorview when I was 15 at the old Hugh MacMillan centre. I lived close by and I started in Spiral Garden. During the school year I volunteered at Laura Hunter’s gym skills program, which evolved into a summer job at her bikes and balls camp.

The family of a child I supported there one-on-one invited me to their home to get to know them before camp started. It was one of those opportunities where I got to see the love and happiness and joy, but also the complexity and challenges that families face raising a child with special needs. When I left for university I knew I wanted to be in health care. Ultimately I decided to go into medicine. I came back here as a medical student on a general elective and as a resident in general development. I saw a number of different aspects of child development and decided this was a good fit.

BLOOM: Why was it a good fit?

Andrea Hoffman: I’m a detail-oriented person, which works well for complex care, and I like the idea in child development of looking more holistically at the child and family, instead of just at an individual bodily system. I like the time we can spend to get to know children and families—to follow them longitudinally to see how both change over time. The other piece I really like is supporting kids and families in trying to optimize quality of life and helping kids reach their full potential. 

BLOOM: What's a typical day here like?

Andrea Hoffman: I don’t think I have a typical day. Every day is different, which is why I love this work. I wear four clinical hats. I’m one of the doctors on the complex continuing care (CCC) unit and with inpatient respite care, and I’m the doctor on our multidisciplinary, outpatient feeding team. I also see children in a general development clinic. What ties those different areas together is that most of the children have some degree of medical complexity. On top of that, I’m involved in research and education and on various hospital committees.

BLOOM: What do you love about your job?

Andrea Hoffman: So much. Seeing how families celebrate their children and find creative ways to include them in family activities. One family spoke proudly about how they adapt water skiing at the cottage so the child can be a part of it.

It’s amazing to be part of a team that supports a child’s development. Many of the things that come easily to other children require so much effort for the children that we see. Things other people take for granted are celebrated accomplishments [here]. That changes your perspective on things.

One of the joys on the inpatient unit is seeing the change in children and parents over the course of their admission. Many come to us after a long hospitalization in an intensive care unit, where the medical team does most, or all, of the care. Here the focus changes. We look to parents to be hands-on—to provide the care and increase their confidence and capacity to manage their child’s medical, therapy and emotional needs. At the start, parents are often nervous and hesitant, but when they leave, they’re incredibly capable and the care just flows. That’s a really beautiful thing to see.

BLOOM: What’s the greatest challenge?

Andrea Hoffman: The larger system for children with medical complexity. We rely on the larger system for successful transition to the community and we spend a lot of time doing preparation and advocacy. There have been significant advances in community services. But even when a child gets everything they’re eligible for, it often isn’t enough to fully meet the many needs of families. For families with limited financial resources or social supports we know that the transition can be particularly challenging.

We encourage families, while they’re here, to bring in other family members or friends who may be able to provide regular support, so that we can train them on the child’s care as well. Making sure that parents get a break from their caregiving responsibilities is important. As part of our discharge planning, we like to arrange the child’s first respite stay here, so that families know they’re going to have an opportunity to recharge. We know that maintaining parent wellbeing is critical for the child’s wellbeing.

BLOOM: What kind of issues in the larger system do you see?

Andrea Hoffman: The system isn’t perfect, and the services families receive at home depend on where you live. Some families receive a lot more than others. We’d like the system to be more equitable, so that all families with medical complexity are adequately supported.

We talk to families after they’re discharged and we hear a lot about larger system issues. They’ve been at Holland Bloorview, in a place that celebrates their child and is completely accessible, and when they move home, they may find their child can’t use the playground or be part of other community programs. Some families are embraced by their community, and others aren’t. It can be hard to prepare a family for what to expect.

There’s definitely more work to be done. More resources are important but it would be great if there was also more flexibility for families to decide how they use funding. For example, if families don’t use all of their overnight nursing hours they can’t use those dollars for something else. For some families, more overnight nursing may be the answer, but for some, more support in other areas may improve the quality of life for the child and family.

BLOOM: What kind of emotions come with this job?

Andrea Hoffman: It’s the full gamut. One perfect example is a child we were transitioning home recently. I was at the bedside to give the discharge summary and say goodbye. There were lots of hugs and joy and celebration and happiness. Just as I was walking out of the room a team member walked in and said ‘We have a glitch.’ The emotion quickly switched to frustration when I learned that one of the community providers was unable to release the equipment the child needed. We almost had to delay the discharge. Instead, we spent the afternoon troubleshooting with equipment providers and the local hospital to ensure everything was ready when the family finally arrived.

There are other times when we share in the family’s feelings of anger and sadness. And sometimes we feel helpless, when there are limits on what we can provide and decisions are out of our control. Sometimes our emotions are directed at the system itself.

BLOOM: How do you not get stuck in that frustration?

Andrea Hoffman: I try to focus on what we can do. We have an opportunity to support families and make a positive difference during what may be one of the most challenging times of their lives. And the families show incredible strength, resilience and dedication. Families trust us with a lot of responsibility, and share a lot of information, and it’s an honour to support them. That said, you can’t help but share in their sadness, sometimes, or in their frustration or anger. And I think that’s okay.

BLOOM: Is there anything specific you do to help cope with those emotions?

Andrea Hoffman: I work in amazing teams. There’s no way we could do this work on our own, without the larger team working together. When we’re dealing with a difficult situation we often talk together. We debrief as a team and we support one another. We acknowledge the emotions and the challenges, so we can continue to provide the compassionate and empathetic care our clients need, without necessarily carrying it all ourselves. I’ve also tried to learn about mindfulness to help cope with some of the big emotions that come with this job. Having an understanding and supportive family also goes a long way in dealing with the stress of it all.

BLOOM: I understand you’re a black belt in karate. Is that something that helps with stress?

Andrea Hoffman: Yes. Having an outlet outside of work—an interest or a hobby—is really important. It’s something I do for me that is separate from work and family and all my commitments. Karate is very physical and I find it’s a release of energy—both positive and negative. It’s an opportunity to do something for me and it’s great for stress relief.

BLOOM: Is there anything you want parents to know?

Andrea Hoffman: I encourage families to ask questions and have a dialogue with their doctor. I always try to be open and honest with parents. I know that when families ask questions they’re looking out for the best interests of their child. I know parents are the expert in their child’s care and I encourage them to advocate for their needs. I learned early in my training that if a parent says something is wrong, something is wrong, and we need to acknowledge and respect that.

I also encourage parents to start thinking about Advance Care Planning for their child. We want to come at it in a holistic way—to understand the child in the context of their family and larger community.

On CCC we've started to meet with families to talk about how they've been affected by their hospital experience, and to talk about their larger goals, hopes and dreams for their child. We also try to understand their fears and worries. We know families have a lot of ‘what if?’ questions. They may have questions about what they would do if their child got sick in the future, or about the different parts of resuscitation and what it means to be “full code.”

We invite parents to talk about those questions with team members, rather than worry about them on their own. It’s important to reflect on what they might do in a future medical emergency, without the pressure of having to make decisions immediately. Different families will make different decisions, but if you don’t have an open and honest conversation, families don’t know what they’re consenting to, or the options available. It’s just one more way that we can help empower families to make choices that are right for them.

BLOOM: I understand your mother has an award named after her and her work as an ombudsperson? Did her sense of social justice influence your career choice?

Andrea Hoffman: I love this question. Both my parents had a huge impact on my life. My love of science and medicine came from my father, who is a clinical biochemist. On the other hand, my mother was the ombudsman at several universities and colleges over her career. She was also an investigator for the Ombudsman’s Office of the Department of National Defence and the Canadian Armed Forces. When she passed away in 2006 an award was created in her honour to recognize people in the defence community who go above and beyond to bring about positive and lasting change. She strived to do that on a daily basis.

My mother taught me about the importance of listening to everyone, as everyone has a story that is special and unique. Communication, and sometimes conflict resolution, is a critical part of what we do in medicine and I learned a lot from her. She taught me that as one person you have the power to help many, and that by changing the system you can help many more.

When my mom was sick in 2005, I learned what it was like to be on the other side of the health-care relationship. There were people who were just focused on doing their job and to them my mom was just another patient. But a handful of people saw her as an individual, and they showed care, compassion and empathy, making some of the worst moments a little less dark for her and our family. I was in medical school at the time and it had a profound impact on the kind of doctor I wanted to be. I try to remember that although this is what we do, day in and day out, for the family in front of us this is a life-changing time. I strive to be someone families feel helped to positively support them on their journey.

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Parents of ventilated kids risk own health due to sleep loss

About half of the parents and professionals who've filled out our BLOOM survey so far have asked for more stories on families raising kids with high medical needs. Here is a start!

By Louise Kinross

As a nurse practitioner who’s supported hundreds of families bringing home a child who uses a ventilator, Krista Keilty knew these parents struggled to get a good night’s sleep.

But no one had ever measured the difference in their sleep compared to that of parents raising children without health issues.

So the SickKids researcher conducted a study that used a wristwatch-like device to measure sleep and wake activities over a week in 42 parents of kids who use medical technology and 43 parents of kids who don’t.

“We found the parents of kids with medical complexity sleep 40 minutes less per night,” Krista says. “When you think about that difference over the span of six years, which is how long the families had on average cared for their child, that’s three times as many sleep-deprived nights or 208 less full nights of sleep in that period. That’s a large sleep debt you can’t get back.”

In addition to sleeping less each night, the sleep of parents of kids with high medical needs varied widely from night to night. “Their sleep was all over the place. It means they might get to sleep at a reasonable hour, which is 11 p.m., one night, but then not get to sleep till 1 or 2 the next night, and then get up at a different time each morning.”

Twice as many parents of kids using technology were identified as poor sleepers, waking up more and not feeling rested in the morning. They also had three times as many nights when they got less than six hours of sleep.

“These caregivers are needed by society and by their children to be healthy and well and capable of caring for them for years to decades at home,” Krista says. “Yet the sleep deprivation they get predicts these parents will experience negative downturns in their health much earlier than other adults.”

Lack of sleep puts these parents at risk for heart disease, obesity and pain and may compromise their immune system, Krista says. “We also know sleep deprivation over time influences mood—possibly causing depression and anxiety—and the ability to complete tasks that require quick judgment and decision-making. The data would suggest the parents of kids with medical complexity are at increased risk of [car] accidents.”

The study found that three times as many parents of kids with medical complexity “had a level of depressive symptoms that means they may have clinical depression,” Krista says. “When making study home visits I had a number of conversations with family caregivers who would talk quite openly about how difficult it is for them sometimes to live with this ‘blue’ mood they have on a day to day basis.”

The reasons for sleep loss in parents of kids using technology requires further study, Krista says. “They can be categorized into parents who are so vigilant they can't sleep even when they have the chance, or have anxiety or worries or poor sleep habits themselves, or poor sleep habits in the child that result in them waking up and needing to be consoled. The care needs can also be so high that parents are up every two hours on a good night to turn and reposition their child. There are also environmental factors, such as the number of nursing hours families get and how the technology itself may intrude on sleep—for example, waking parents when false alarms go off.”

The nursing hours families in the study received ranged from zero to 100 hours per week, with parents getting about two nights of coverage a week on average. “This means that for at least five nights a week they are managing on their own.”

Not only do parents of kids using medical technology need more sleep, Krista says, but they need better quality and more consistent sleep.

In addition to measuring sleep and wake activities in the parents and children, the parents in Krista’s study answered questionnaires about depression, sleepiness, fatigue and quality of life.

The degree of sleep disturbance experienced by parents of kids with medical complexity may interfere with parents’ ability to work outside the home and their motivation to make stay connected to friends, Krista says. The parents of kids with technology in her study were more likely to be single, underemployed and have a lower household income.

Krista says the study is a first step in finding effective sleep interventions for parents of kids using medical technology. “In order to plan an intervention, we needed to quantify and characterize the sleep problems in this population so that we could think about what measures to look at in future, what treatments to try and how big a sample size would be needed.”

Previous studies have always relied on parent self-reports about sleep habits, which aren’t reliable.

Krista has already launched a second study to assess Ontario parent and home care providers' ideas about the causes of sleep disturbance and what interventions may remedy them. Results from the second study will guide future research to test a specific intervention.

Krista Keilty is nurse practitioner and project investigator with the Centre for Innovation and Excellence in Child & Family-Centred Care at the Hospital for Sick Children. She is also a fellow in Innovation in Pediatric Homecare and a CIHR post-doctoral fellow in Sleep and Biological Rhythms.

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How baby went from 'alien creature' to 'our son'

By Louise Kinross

‘Our Curse’ tells the story of a Polish couple whose son Leo is born with a rare syndrome that prevents him from breathing while asleep. Without the support of a ventilator, he will die. The film, by Leo’s dad Tomasz Śliwiński, is nominated for a 2015 Academy Award for Documentary Short. You can watch it in its entirety on The New York Times.

Leo’s syndrome is known as Ondine’s Curse—or Congenital Central Hypoventilation Syndrome (CCHS). Leo’s dad writes that “He evolved from a 'curse' (a term we took from the disorder’s name), an alien creature with lots of medical noisy equipment, into our truly beloved son, without whom we could no longer function.” The movie is a beautifully honest look at how parents try to make sense of a life-threatening illness in their newborn. BLOOM will run an interview with Leo’s mom Magda in the print magazine coming out at the end of this month. Here’s a sneak peek.

BLOOM: Did making the film help in your healing process?

Magda Hueckel: Yes, definitely. First of all, it was very important while we were shooting. It was a really dark period for us, and sometimes we had no strength at all. Leo was still in the hospital, and after coming back home, all we could do was sit and stare at the wall. Nothing seemed important or worth any effort. But, once we decided to make the movie, we had to mobilize ourselves, take a camera and start shooting. It made us active. We felt that we were doing something creative.

And then—watching the movie helped us accept the trauma that we went through, to cry it out, to finally put it in perspective, and start a new life. It was the best therapy ever.

BLOOM: Did health workers help you feel that you could cope with Leo's medical needs?

Magda Hueckel: Unfortunately, the medical care was not perfect. Of course we have met many great nurses and doctors, who have been really involved, but in the beginning we felt very alone. All the knowledge we have, we had to seek from other families who deal with CCHS or from doctors that we reached out to.

BLOOM: What advice would you give parents of infants who have life-threatening illnesses or complex medical needs?

Magda Hueckel: Never give up. Check out everything. Someone tells you your child won’t walk—keep trying; your child won’t eat—give him a chance. It is worth your effort. And never lose hope—medicine is developing and miracles happen. And try to enjoy your life as it is. Even if you cannot do many things and you have a lot of restrictions—you can choose other activities. There are millions of possibilities. You can be happy, you can enjoy your life, you can push yourself to grow.

BLOOM: How is Leo's health now and what does he enjoy?

Magda Hueckel: He is four years old and he is a great guy. He loves travelling. He is starting to read and speak. He is really a happy boy. All his adventures are described on our blog—an English version is available at LeoBlog.

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A deadly disease takes a family captive

By Marcy White

I hate Pelizaeus-Merzbacher disease (PMD).

On March 21, 2003, I was told that PMD was the cause of my son Jacob’s many medical problems. I’ve hated the disease ever since. When I learned that it is degenerative and would continue to burrow into my son’s brain and nervous system like a voracious mole, until it ate away his abilities to think, to breathe and to live, I detested PMD. And when I witnessed my son on a ventilator two months ago because the disease had so weakened his immune system that a cold required him to have mechanical assistance to stay alive, my hate relationship was in full swing.

These days, I can’t think of PMD without my heart twisting with loathing. This is hate to the extreme. When Jake was hospitalized for the first three months of his life, I repeatedly said it wasn’t fair. Why was he, an innocent newborn with a whole life of possibilities ahead of him, suffering such excruciating pain and struggling so hard to breathe? It didn’t take long for me to realize that the saying “life isn’t fair”—often used half-heartedly by my parents when I complained as a teen about not being allowed to go to a party with friends—is 100 per cent accurate. Life isn’t fair and my son’s disease is proof of it.

Life’s cruelty and my abhorrence of PMD crashed into our house when I had to explain to my twin daughters that Jake’s PMD was worsening.

The fact that Jacob has PMD is wrong. The rapid change in his health is completely undeserved. And the fact that Jamie and Sierra have to experience all this, alongside their brother, is unreasonable in its heartlessness. At ten years old, Jamie and Sierra are forced to witness this injustice every day.

When Sierra and Jamie were six years old, they gave their friends an impromptu genetics lesson by explaining the inheritance pattern of the disease that affects their big brother. They’ve always known that Jacob’s care is difficult and there are nurses in his room every night to ensure his medical safety. But until recently, they didn’t realize that PMD is a fatal disease and that despite our efforts at researching a cure, their brother might not live long enough to benefit from medical breakthroughs.

I’ve learned that people adapt to changing conditions. I remember saying that I wouldn’t be able to stick a tube down my son’s throat and suction out the mucous that was blocking his airway and causing him to turn blue. Now, I do this every day and my hands remain surprisingly steady during the process. When Jamie used to hear the rumble of the suction machine, she would stop what she was doing and put her hands over her ears to block out the awful sound. But, last week, as I was threading the tube down Jake’s airway, Jamie held her brother’s hand and talked him through the entire procedure, even wiping away the tears that pooled at the edges of his eyes. There was so much injustice in that scene, but also a ton of love.

My daughters experience things on a daily basis that youngsters should not have to bear, and that is deplorably unfair. They are aware of the frailty of their brother’s lungs, they know how to read his oxygen monitors and understand what numbers indicate a dangerously high heart rate. They dissolve into tears when he needs to go to the emergency room because, in their experience, that is the start of a long hospitalization and a complete disruption of their lives.

Caring for Jacob is extremely challenging and scary at times. He can go from breathing quietly to sounding like he is drowning in his saliva in seconds. The level of oxygen in his blood can plummet from a safe 98 per cent to a dangerously low 77 per cent in the blink of an eye. The doctors and nurse practitioners have taught me how to care for him and when to intervene. So for the most part, I know how to “manage” my son’s precarious medical needs. I don’t like it, but I am adjusting to the new level of care that Jacob requires.

Late at night, when the house is quiet, save for the humming of the oxygen concentrator in Jake’s room, what keeps me awake is thinking about how PMD is affecting my twin daughters.

Prior to their births, I read a lot about siblings of kids with special needs. Everything I came across consistently stated that kids raised in homes with atypical children grew into empathic, sensitive and caring adults. I do believe that, and have already witnessed several examples of my daughters’ concern for the feelings of their friends. They display a level of compassion beyond their years.

Sierra and Jamie are forced to cope with things many adults are unable to fathom. My heart shatters when they come home from school crying because their friends don’t understand what it’s like to live with a disabled brother whose health is so fragile. I have to explain that most of their friends aren’t emotionally equipped to support them as they express their fears. And that, too, isn’t fair.

How do I hold it together when they ask questions like “Why doesn’t home feel like home anymore?” or “Why does my life have to be harder than everyone else’s at school?” or “Will a cure for PMD be discovered in time for Jake?”

These are questions about which little kids shouldn’t have to wonder, and issues from which I desperately wish I could shield my daughters. But I can’t. So we talk. In the car, on our way to an activity, we talk about why we don’t travel like their friends’ families. And at dinner, we talk about whether the auditorium where the girls are performing in a play is wheelchair accessible so Jacob can come and watch. And late at night, in the darkness of their rooms, we chat about how unfair it is that their brother has PMD, that he can’t tell us exactly what he’s thinking or feeling and that they are scared to be alone with him in case he stops breathing.

We love Jacob with every fibre of our beings. But we hate PMD.

This piece originally appeared in Her Magazine. You can follow Marcy White on her blog Cure PMD or read her book The Boy Who Can.

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'Mom, why are people staring at us?'

By Christina Herbers

It was a chilly Saturday morning as I drank coffee and thought about a family activity that would be fun for both of our girls. I decided that we’d spend the day like many other St. Albert families, so we headed out on an adventure to Servus Place Rec Centre.

My husband and I were excited, as it was the first time our youngest daughter Addison was trying out her new hockey skates. We packed up all of the skates, snow pants, mitts and toques, piled the girls and all of their stuff into our mini-van, and headed out. We entered Servus Place.

And then it started.

I had tried to prepare myself on the van ride over: People will stare, I told myself. Don’t let it bother you. Just enjoy your Saturday. But, despite best efforts, it always gets to me.

“Mom, why are people staring at us?” asked Addison, 3, voicing the words in my head.

I’ve asked this question for seven years, ever since my daughter Jaina was born with multiple disabilities. But I wasn’t sure I knew the answer. Why was this simple question so difficult for me to answer?

Should I tell my younger daughter the truth? And, if so, what is the truth, or what version of it is she ready for? I want to protect her innocence.

I wish I could open it up to the strangers who stare. I know we are different, but because you stare silently, you magnify the differences.

I wish I could ask people: Why do you stare? Do we make you uncomfortable? Do you have questions? Do you feel sorry for us? Do you pity us? Do you love Jaina’s pink wheelchair? Maybe you have not yet seen a beautiful angel like our dear daughter Jaina. Maybe she is the first angel child that has crossed your path. You see, Jaina very nearly died before she was born.

In January 2006, my husband placed his hands on my belly and felt Jaina kick for the first time. I thought to myself, we’re halfway there!—halfway to fulfilling my dream of having a family. I was 20 weeks pregnant, and my baby would be born in another 20 weeks, sometime at the end of May.

Then the car accident happened. We were driving home from a dinner with friends. In an instant, the baby I had dreamed of suffered a major injury. My spleen burst upon impact, and my baby went without air for a few minutes. In those minutes her life changed forever. A key part of Jaina’s brain stem calcified, so she would never be able to walk, talk or breathe or eat on her own.

I’ve come to believe that our beautiful Jaina was specially placed in our family for a reason.

The reason wasn't clear to me initially. I went through all the stages of grieving the child that I thought I would have. When Jaina was in Stollery Children’s Hospital for the first months of her life, I was in serious denial. Then, for many years, I was angry. And now, I can finally accept.

I believe Jaina is here to guide us to a future where we all belong: a future where families like ours are not stared at, where we are welcomed with smiles.

Let’s open up the dialogue between us. Ask the hard questions. Bring your children and come over to say hi to our family. Ask me how we are doing. Ask about the weather. Ask me about Jaina. Just talk to me. Include us in your community.

Together, let’s abandon our outdated beliefs about what defines the “typical family.” Let’s work towards a future of acceptance and inclusion. Let’s create a supportive community, one made up of people and families of all types.

Some of us may look different, and some of us may speak different. And some may be angels walking among us. That is my Jaina. She is here to bring peace. She is a calm, peaceful force. She does not suffer, and she is not in pain. She has fought to be here since before she was born. She does not know any different. To her, she is perfect, just the way she is. She has touched many lives, and I hope that in some small way, she can touch yours.

Christina Herbers is mom to girls aged five and eight. She works part-time as a consulting engineer, and is a writer, volunteer and weekend warrior living with her husband and children in St. Albert, Alberta.

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'If it's part of me, I learn to love it'

Here's our full interview with Emily!

Emily Chan, 16 (above), has a rare neuromuscular condition that creates general weakness and serious breathing problems. She uses a ventilator and a power wheelchair. At six months, when she was in an acute-care hospital, her parents were given the option of stopping medical treatment.

“They told me I have a choice,” says Peggy Chan. “That I don’t need to keep her. The doctor said they had families who choose to give up their baby because they won’t have any quality of life. I was very mad and I said: ‘Are you crazy? As a mom, you’re not even giving me a chance to try to raise her?’ If I had given her up I would have regretted that decision for the rest of my life.”

Emily lived for six years at Holland Bloorview before her medical condition improved and she was able to move home with her parents. Emily says she likes “all the typical teenager stuff” and wants to go to university to become a child psychologist.

BLOOM: How do you define quality of life?

Emily Chan: It’s living each day to the fullest, being happy. I think everyone deserves to have that chance. The purpose of life is to be happy, to be happy with yourself and what you’ve done and hopefully make a difference somewhere.

BLOOM: What is your life like now?

Emily Chan: I have a great life. I have everything—family, friends, cute guys to look at. Everything is going great in my life. I have pretty good marks at school—an 82 per cent average. I like Facebook and I’m really into (Korean)-pop. I play the guitar and piano and really love doing that. Whenever there’s stress in my life I pick up my guitar and play my worries away. It’s a great stress reliever. I like talking, hanging around, going shopping, going to see movies—all the typical teenager stuff. I love Harry Potter.

BLOOM: What about reading. Do you like those teen romances?

Emily Chan: No, that’s so cliché. I like the deeper, darker stuff. I’m just finishing The Hunger Games.

BLOOM: What are your dreams for the future?

Emily Chan: I want to become a child psychologist. I also want to have a family and drive a Ferrari—don’t we all? But right now I just want to get to university. Living in a hospital for the first six years of my life has given me a broader perspective of things. I got to interact with adults more than the average kid, which made me mature faster. It’s like my brain is 20 when I’m 16. I’ve known a lot of people who had to go through really difficult situations and I’m less quick to judge. I know that even though a person may appear a certain way it’s because of something that’s happened to them in the past. You have to see the person, not just the person they appear to be or how they act. I understand the feeling of being isolated, which will help me understand someone who feels alone for different reasons.

BLOOM: How do you view disability?

Emily Chan: It’s just a part of you. God made you this way for a reason and you have to learn to love yourself. You have to realize that a disability isn’t going to hold you back. My mom always told me that it doesn’t matter how you do something as long as you get it done. If you have a wheelchair it just becomes another part of you. And sometimes you can use it to your advantage—like running over people you hate!

BLOOM: Some kids resist what makes them different.

Emily Chan: You need to embrace it, because you can’t change it. If you want to live a good life you have to be happy and being happy means loving yourself. You do it for the sake of you and your happiness. Everyone has flaws, no one’s perfect. For me it’s my equipment. But I learn to look past it.

BLOOM: How do you see your equipment?

Emily Chan: It’s a part of me, so I learn to love it. If someone rejects my equipment they’re rejecting me because it’s grown on me. If they ask ‘Why do you use that?’ they’re kind of insulting me. I help my mom when she changes my trache and if I need to suction, I’ll do it myself. It makes me feel like I have more control in my life.

BLOOM: What is it like for you to be in a regular high school?

Emily Chan: I feel I’m really lucky because I go to an arts school and there’s a lot of diversity there. They have so many different kinds of people that the students are more accepting. If I went to any other school I think I would be more outstanding, more prominent. Here I’m just part of the diversity.

BLOOM: Did you ever have trouble with other kids at school?

Emily Chan: When I went to my home school for Grade 2, I was the only one in a wheelchair and it was hard. They were always teasing me. For group projects no one wanted to partner with me. These kids had been together since kindergarten and were close knit.

BLOOM: How do you think they viewed your disability?

Emily Chan: Like it was going to hold me back: ‘She’s not normal, she doesn’t fit in with the rest of us, she’s an outcast, she can’t do anything.’

It doesn’t happen much now, but there was a group of girls taunting me at school. When I went past them one said ‘Oh, you almost ran over my foot’ when I was no where near them. I said ‘No, but would you like me to?’ I like to use humour to turn the joke back on people.

BLOOM: Is there advice you’d give kids who struggle to make friends?

Emily Chan: I tried to approach kids and be friends with them but it didn’t work out that great. I did become close to one girl and she stuck by my side. In Grade 7 and 8, I found myself developing a skill of not letting people take advantage of me. I can stand up to people and fight back, instead of being tread upon. Something that helped was there was a class where students with physical disabilities could go at recess or lunch and I became very close to those people. They were friends I could talk to and fall back on, and I think that kept me going. I learned not to let things get to me. To look past a hurtful word and feel sorry for that person because they have to bully someone just to boost their self-esteem.

BLOOM: What advice would you give parents of children with disabilities?

Emily Chan: Don’t give up on your kid—no matter how grim the situation might seem. Always stay positive. You have to put in the time and the effort. Kids need their parents to give them love and support. Nurses and doctors will have sympathy, but it’s not the same as a mother’s hug that gives you that warm feeling. Every kid needs that. What got me out of Holland Bloorview was the constant pushing and love and support of my parents. They got me the treatment and the help I needed to thrive. My mom had a drive to bring out my potential and I think every parent should have that. In my opinion, many parents don’t have that devotion anymore.

BLOOM: Is the condition you have usually progressive?

Emily Chan: I’ve done some research about it and read stuff online about boys who have the diagnosis. It’s rare for a girl to have it. For the boys it’s a progressive condition and it keeps getting worse and worse. I’m really healthy now and I don’t have issues with pain. I think part of it is living at home and not being in a depressing hospital. I have more room to grow and expand on new things and explore what’s out there.

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'Burden' of complex kids not whole picture, ethicist says

I was privileged to interview Franco Carnevale at the ethics conference on children with disabilities at the Montreal Children's Hospital last week. Franco is a clinical ethicist who worked for a couple of decades as head nurse in the pediatric ICU at Montreal Children's. He's also a psychologist!

Here he talks about "an implicit understanding that (children with disabilities) don't count in the same way as other children" -- a bias found within the health system itself. To illustrate his point, he shares a research project to study families of children who live at home with ventilators. Franco admits that going into the study, he assumed they would be documenting primarily hardship and stress. But what he found was "a lot of the most stressful moments in life are intertwined with the things that matter the most." He titled the resulting paper: Daily Living With Distress AND Enrichment.

Do not miss this clip! Go directly to YouTube for a full-screen version. Louise

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