Thursday, June 21, 2018

The kindest doctor knows how it feels to be a patient

By Louise Kinross

Two experiences helped Dr. Brian Goldman understand how it felt to be on the receiving end of care, and led to his “journey to find kindness around the world, and to see if I could rediscover it within myself.”

The emergency room doctor was speaking to developmental pediatricians at Holland Bloorview today about his new book The Power of Kindness: Why Empathy Is Essential in Everyday Life.

Brian recalled a time in the ER when he snapped at a family. The family wanted their 68-year-old mother with an end-stage disease admitted, and repeatedly asked in the ER if he’d made the referral, which he had.

Weeks later, after the woman died, her husband wrote Brian a letter “accusing me of being unkind to the patient, family and him,” he said. The husband asked to meet Brian “so we can find out if there’s still a human being lurking under all that brusqueness.” He met with the family and learned about who the woman was “as a mother, partner and worker. At the end, we all had a good cry.”

The other experience that prompted a greater understanding of patients was caring for his own father, who developed congestive heart failure after caring for his mother with Alzheimer’s.

After working a night shift, Brian learned that his father was having bad chest pains. By the time he got to his dad, had him admitted to hospital and got him settled that night, Brian had been up for 40 hours. He kissed his father on the forehead, told him he loved him for the first time, and went home to collapse.

His father died that night. It was back at the hospital, when an internist began to awkwardly explain his death, sensing that Brian might attack him, that Brian said “I understood what the other family was feeling. Health-care providers who have the greatest grasp on what it’s like to be patients have been patients.” What Brian said to the internist was “Thank you very much for looking after Dad.”

Brian noted the difference between sympathy—a somewhat detached gesture of concern when you don’t understand what someone’s feeling—and empathy, which “is the ability to imagine what it would be like to be the other person.”

Affective empathy happens when you feel what the other person is feeling—kind of like catching a contagious emotion, he said. For example, an orthopedic surgeon might feel exactly what a patient who has just undergone a knee replacement would feel. This is not helpful, he said.

Cognitive empathy, which is the ability to imagine someone’s perspective, is “what we want in abundance in health professionals.” Emotional concern is what drives us to take action to help.

Brian referenced a study that showed that empathy drops in medical students year over year, from their first to their fourth year.

He talked about the definition of kindness—“the quality of being friendly, generous and considerate,” and how it’s rooted in the old English word “cynde,” meaning kinship.

“We tend to ascribe kinder qualities to people who we identify as being us,” he said. But this tendency “can change on a dime,” he said, describing a simulation where an adult wears a motion capture suit and sees an avatar of him or herself as a child on a screen. The avatar appears as you “in another cultural group,” he said. If a second character that belongs to the same cultural group is introduced, “you will identify with them.” And if a third character belonging to your own cultural group appears, “you will say 'that is not me.' It’s that superficial,” he said, noting that humans and orangutans share 97.5 per cent of the same genome.

Brian said some medical cultures devalue empathy as a skill. “You’re either compassionate or you’re an excellent provider,” is the message, he said, “but it’s a false dichotomy.” He said medical students enter their program full of compassion “and it gets drummed out of them.”

Contributing factors include “a lack of focus on empathy as something to be prized and appreciated,” he said. He noted that’s while technology is wonderful when it allows clinicians to focus more on the patient, too often, staring at a screen while talking to a patient interferes with rapport. Specialization is a big impediment to kindness and empathy, he said, because people fall through the cracks when a doctor can say “That’s not my part of the body. I don’t deal in that.”

In the ER, time pressures work against kindness. Brian spoke of “the debilitating feeling of apologizing to everyone you’ve seen, eight or nine people in a row.” He noted that with a complex situation, a 10-minute interaction could balloon to 45 minutes.

Brian said adult health care is increasingly managing chronic disease, whereas many med students picture themselves treating acute disease. Burnout—exhaustion, alienation, withdrawal and apathy, “not caring”—is higher in medical students and residents than it used to be. “The higher the burnout, the lower the empathy.”

Brian said humans are hard-wired to be empathetic: newborns cry when their mother cries, and when a baby and mother interact, “the same parts of their brain light up.”

But in a complicated world of competing priorities “empathy is a choice. We’re not compelled to be empathetic,” he said.

Brian shared some personal stories of people with extraordinary empathy. One was Mark Wafer, who bought six Toronto Tim Horton’s stores. The first person Mark hired was a young man with Down syndrome who walked into a store looking for a job. What led Mark to take a chance on the young man was his own experience growing up deaf. “It wasn’t being deaf, it was being discounted, that was his engine of empathy,” Brian said.

We also heard the story of a Jewish girl whose family escaped Nazi Germany. Her father ran a home for the aged and the girl grew up there with its residents. She later became a psychologist and developed a method of validating the behaviours of people with late-stage dementia “as meaningful symbols of unfinished core personal issues,” Brian said.

“Long-buried feelings that are expressed verbally or in behaviour can be resolved when caregivers validate them.
” he said. These are meaningful gestures.” For example, when a patient speaks of their deceased grandfather, “don’t yank them back into the present,” he said, “or lie, or redirect them. Ask ‘What would you say to your grandfather?’” The agitation we often see in people with dementia is how they “work on deep trauma.”

Brian said that people who become health-care providers are “often burdened by more shame than others.”

Brian said we can use our own emotional despair to help others in distress, or embrace errors we’ve made to help those who have made terrible mistakes. “Share openly what you are ashamed of. Be mindful and live in the moment.”

Before sharing bad news, such as a patient’s death, Brian talked about his own practice of centring himself. Because he tends to ruminate on the negative, he said he takes a minute to picture himself watching a parade of floats going by. “This absurd idea of a parade of bad things going by” allows him to release them and “not take ownership of others’ distress.” That means he can be fully present for family members “and acknowledge what they feel. We need to give them permission to feel the way they do.”

Wednesday, June 20, 2018

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

By Louise Kinross

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

BLOOM: What is the purpose of the therapeutic playroom?

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

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

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

BLOOM: How did you get into this field?

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

BLOOM: What’s the greatest challenge?

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

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

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

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

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

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

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

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

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

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

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

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

BLOOM: What drew you to art therapy?

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

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

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

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

BLOOM: What kind of people volunteer in the playroom?

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

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

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

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

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

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

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

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

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

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

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




Monday, June 18, 2018

The care crisis that should shake us all

By Louise Kinross

If you didn't see this CBC White Coat, Black Art town hall on the crisis facing youth with complex disabilities aging out of the services and funding they and their families depend on, it's well worth the listen. It's packed with firsthand stories from parents, a young adult with a disability and experts in children's rehab, education, mental health and law, a couple of whom have siblings with disabilities.


You know how I can tell it's the best thing I've heard on the topic? As a parent, I was shaken after listening to it, and I still am.

It was three years ago that I found myself writing to the deputy minister of Ontario's Ministry of Community and Social Services, our MPP, the ombudsman and all kinds of people within the bureaucracy. My own son was leaving school and we had no funding to support what he would do during the day.

We had registered with Developmental Services Ontario three years earlier, but the person who came out to do the four-hour assessment told us at the end of it that there was no money. The Ministry had frozen new money for Passport funding, which is the main way to access money for a support worker so that your child can volunteer or do a work program or fill their day with a passion. There were no government-funded programs available to us.


At a time when most parents are sending their children off to college, I needed to help my son carve out a good life, while I continued to work outside the home. 

Today, he does farm chores at Windreach Farm on Mondays and Fridays. Horses on Mondays, and chickens on Fridays. On Tuesdays and Wednesdays he cleans at Variety Village. On Thursday he goes to an arts program at L'Arche.

In the fall after my son graduated, after an extraordinary amount of advocacy, the likes of which I'd never needed in the children's system, we received a small amount of Passport funding, certainly nowhere near sufficient to cover our worker hours Monday to Friday.

Remember, I'm someone who's worked in the field since 1999. I have connections. If that was the best I could do, what happens to the parent who doesn't speak English, or isn't able to fit extreme advocacy into their day?
 

Over the next two years I fought to have that funding increased. This year it is at an adequate level, and for that I am very grateful. Actually, it's a mix of guilt and gratitude. I feel guilty that many families have not received this funding. I feel guilty for the numerous times I was told by government gatekeepers that other families had real problemstheir kids were homeless or the parents were dead. Because that's the way the system plays parents off each other. I can't count the number of times a government employee told me that unfortunately, in the adult system, we have to wait for someone to die to open up resources. 

But funding is always tenuous, especially with our new government. And we have no leads on supported housing for our son when we are no longer here.

So when I listened to Rose Canto, above with son Matthew, talk with Dr. Brian Goldman about not knowing how to fill his day when school ends at 21, I felt a familiar sense of panic. I felt wobbly. 


The degree to which this system brings parents to their knees can not be overstated.

Our children are valuable members of society and some of them require similar supports as adults. That many will instead sit at home all day, in front of the TV, with a parent, should shake us all.






Wednesday, June 13, 2018

Green acres is the place for me

By Louise Kinross

In 2014, Maya Wechsler and Greg Masucci made a drastic life change. They moved from a row house off a busy street in Washington, D.C. to a fixer-upper house on 24 acres in Bluemont, Va. They were tired of fighting for a good education for their son Max, now 10, who has autism, and wanted a simpler, safer life for Max and his sister Delilah. It wasn’t part of the initial plan, but since making the move they launched a non-profit called A Farm Less Ordinary, which hires about a dozen adults with intellectual disabilities to grow, harvest and sell organic vegetables and herbs. They hope to expand into producing jams, pickles and pesto. Maya and her husband Greg still work full-time jobs. BLOOM interviewed Maya to learn how the family swings its busy schedule.

BLOOM: I understand your husband was a realtor?

Maya Wechsler: He still is. He’s at a closing right now. I still work too. I telecommute with PricewaterhouseCoopers as a proposal manager.

BLOOM: You both work full-time, in addition to running the farm?

Maya Wechsler:
We do work around the clock, but we have a farm manager this year, which makes life a little more livable. She schedules the employees and about 20 volunteers.

BLOOM: Can you describe your son Max?

Maya Wechsler:
Max is non-verbal, with autism. He’s always looking for sensory input and needs to be running around outside. He needs full-time care and we have someone to do that while we’re working. The farm is for people like him, but I’m not sure if Max will ever be able to work here. I don’t think he has the attention to detail to be harvesting lettuces.

BLOOM: What does he love?

Maya Wechsler:
He loves jumping, screaming, going for walks and hikes in the Blue Ridge Mountain. He loves our animals and we’re thinking of increasing the number of animals we have. He loves music videos and listening to Harry Potter. He’s home-schooled, but not by us.

BLOOM: What was life like when you lived in the city?

Maya Wechsler:
We were fighting non-stop with the public school system. We were fighting to get a private placement for Max. A lot of bad things happened, which I’m not going to talk about. We were going to have to fight again to get more funding, and we couldn’t take it anymore. That’s why we decided to move out here.

BLOOM: How did you figure out when your son was so young that you wanted to make such a big life change? I have an adult son who could benefit greatly from your program, but I haven’t done anything so drastic.

Maya Wechsler:
When we moved to the country, having a non-profit farm wasn’t part of the plan. We just wanted to get out of the city and away from the traffic and fighting with the school. Then when we got here, we thought what a waste of the land. I have a comfortable history of teaching myself stuff—I taught myself photography and ran a photography business. We had always been doing advocacy for people beyond our son, and were politically active, and we didn’t really feel right about giving all of that up. There are so many teens and adults with intellectual disabilities who have a lot of time on their hands and a desperate desire to work.

BLOOM: How does the farm work?

Maya Wechsler:
We grow vegetables and herbs and are working on fruit. We’ve planted some blueberry and strawberry and raspberry plants and our goal is to move to value-added foods like jams and pickles and pesto. We’ll always grow veggies and we have a membership program where we deliver harvest once a week in crop boxes. We also have a contract with a food bank. Today we’re harvesting for a big delivery of fresh produce for low-income people. We also do a farmer’s market and a lot of fundraising, and hope to get more grants.

BLOOM: How many employees do you have?

Maya Wechsler: Twelve. They have intellectual or developmental disabilities or mild mental illness, such as anxiety and obsessive compulsive disorder. We’re not equipped for people with physical disability. Some people can drive themselves here, some people get rides, and one person comes from a group home with his job coach.

BLOOM: Is the work seasonal now?

Maya Wechsler:
We operate from mid-March to the end of October. We’re trying to raise money for a true greenhouse so we can grow through the winter and have people come all winter. We have the employees, if we can just get the funding. We run six days a week
Monday through Saturday. When they’re not working here, our growers have nothing to do all day long. They sit around, watch TV and get bored.

BLOOM: What do they get paid?

Maya Wechsler:
They start at minimum wage and that progresses, with initiative, up a dollar during the season. If they come back next season they get another dollar raise.

BLOOM: What has been the greatest challenge?

Maya Wechsler:
Doing it all while parenting and working day jobs. Your energy really takes a hit. First of all we’re exhausted at the end of the day, but we also have back aches and knee problems, so we’re trying to build this up while we still have the stamina, and then hand it off to someone to manage.

BLOOM: How does it compare to the life you had in the city?

Maya Wechsler:
As a family I’d say it’s busier than what we aimed for. But it’s also satisfying because there’s a cycle to the seasons that is pleasant. We literally slow down during the winter, according to the grain cycle. It’s also very satisfying because the kids can be outside freely—we don’t have to worry about them being kidnapped or hit by a bus.

BLOOM: How has it changed you?

Maya Wechsler:
I’ve become more self-reliant. These country skills that we scoff at as a city person, you realize how valuable they are. We’ve learned to do a whole lot ourselves—from fixing tractors to canning fruit.

BLOOM: I was surprised that you both work and manage the farm.

Maya Wechsler:
Autism costs a lot of money. There’s a lot of therapy, and we can’t afford to home school ourselves. Greg and I don’t even get paid from the farm yet. For anyone considering running a farm like this, at least one person has to work off the farm, especially in the United States, due to our health care system.


This is a fabulous Upworthy video about the family.

Tuesday, June 12, 2018

Horrific conditions led to two preventable deaths

By Louise Kinross

Two stories about horrific, entirely preventable deaths of people with disabilities crossed my desk.

In one case, a British woman with Down syndrome died of sepsis—a blood infection—in 2015 because nurses at the home she lived in left a blocked catheter in her for months. Her name was Sandra Miller.

In the other, a 13-year-old Wisconsin girl with who was unable to walk, talk or care for herself, died of sepsis after her mother abandoned her for days during the Memorial Day weekend last year. She was found by police in a diaper weighing 1.25 pounds. She had a rare syndrome called Wolf-Hirschhorn and lived alone with her mother. Her name was Brianna Gussert. She is pictured above with her father Greg.


These were slow, painful, entirely unnecessary deaths. Let's give Sandra and Brianna a voice in death that they obviously didn't have while alive.

Monday, June 11, 2018

Sometimes life's a pain, for everyone


By Louise Kinross

In 2013, Swiss disability group Pro Infirmis created a powerful ad called Because who is perfect?

They invited people with a variety of disabilities, such as a curved spine or an amputated leg, to have their measurements taken, then made mannequins to replicate them. The mannequins were dressed in high-end clothes and put in store fronts on Zurich's main shopping street.


The same disability group just released a new ad above: Everyone is equal. No one is more equal.

In this ad, people with disabilities experience common, everyday frustrations, like a vending machine that keeps spitting out change, which have nothing to do with disability. The spot was created by agency Thjnk Zurich and directed by American Jon Barber.

What do you think?  

Friday, June 8, 2018

A mom discovers what the doctors missed

By Louise Kinross

Many of you know Brenda Agnew, the powerhouse behind the Parent Advocacy Link (PAL) Facebook group that connects over 1,500 parents of children with disabilities to share practical and emotional support. You may not know that Brenda’s son Maclain, 10, has disabilities that stemmed as a newborn from untreated jaundice, a condition that happens when too much of a chemical called bilirubin builds up in the blood, causing the skin and eye whites to look yellow. Left untreated,
 Maclain's jaundice caused kernicterus, a type of preventable brain damage.

Maclain was diagnosed with cerebral palsy at age one, but Brenda felt that something didn’t add up. She read Maclain’s medical records, asked questions, searched on Google and got a neurologist to look at an earlier MRI. Her suspicions that he had kernicterus were confirmed before Maclain was two. Without her investigative work, the true cause of Maclain’s disabilities would be unknown.

What happens to a parent who learns that their child’s disabilities were preventable? What happens when a mother thinks her child received the best neonatal care, only to learn that a common condition that’s entirely treatable was ignored? BLOOM spoke to Brenda about the unique emotional path of parents whose children were harmed due to medical negligence.

BLOOM: Can you tell us a bit about Maclain?

Brenda Agnew:
He’s going to be 11 in August. His physical disabilities are significant. He needs help with all daily living and self-help skills. Cognitively he’s very bright and aware, but he’s very impacted physically. He’s deaf, but he has a cochlear implants, which have given him the gift of hearing. They're wonderful, until they fall off his head and he needs someone to put them on.

BLOOM: I remember that earlier you didn’t think he was going to speak.

Brenda Agnew:
We were told he wouldn’t be verbal because his tone is so low in his body. He speaks very quickly or he laughs when he talks—with Maclain that happens often—so it’s difficult to understand, but when he takes his time and for those who know him, he’s very well spoken. That’s not always the case for kids with kernicterus.

BLOOM: What is Maclain like as a kid?

Brenda Agnew:
Maclain is a typical 10-year old who wants to knock on doors of the kids down the street, go to birthday parties and after-school barbecues, and get an iPhone. He wants to get married and already has two crushes on girls at school. He’s engaging, social, kind, friendly and accepting. He’s a wonderful soul.

BLOOM: Maclain and his twin Braden were born at 29 weeks.

Brenda Agnew:
His twin brother died in utero about 24 to 36 hours before they were born. They were delivered at the local hospital and Maclain was transferred to a level 3 neonatal intensive care unit.

BLOOM: When did the signs of jaundice appear?

Brenda Agnew:
It was around day three. You look for that yellow tinge, but there was so much going on, with so many wires. His blood work was indicative of jaundice, because he had high levels of bilirubin in his blood and a couple of other clinical symptoms. He got irritable and lethargic. Then, as the jaundice progressed, you could absolutely see the signs of toxicity: he arched his back, he had high-pitched screams, a low-grade fever and there was posturing of his limbs. At first they suspected seizures, and then an infection, but nothing came back from the lab to indicate that. They said they thought it was a delayed neurological response to the trauma suffered from the demise of his twin brother and it would take a few days.

BLOOM: So they never brought up the possibility of jaundice?

Brenda Agnew:
No. After I got his records I realized they’d tracked jaundice in his chart. There were nursing flow sheets with quite a few references to ‘baby looks jaundiced’ and someone had written phototherapy, which is the treatment, with a question mark. But they didn’t say a word about it and phototherapy wasn’t ordered.

They thought he had an infection but nothing was coming back to prove that. They didn’t have any answers. Later, we found out that not only were they using a protocol for jaundice that was outdated, but the guidelines were for healthy, full-term infants, and Maclain was neither.

BLOOM: So when did you first realize that Maclain had been harmed?

Brenda Agnew:
I remember him being discharged from the NICU with no red flags or indications that anything was wrong. I had an older son who met his milestones early, and I knew Maclain was not there, but he’d had a really difficult start. He came home in October and in December we got the confirmation that he was profoundly deaf and they said he had what they called auditory neuropathy. I Googled that and it kept coming up in references to kernicterus. Well, that’s not possible, I thought. He’s never had jaundice. He went in at eight months old corrected to have an MRI for consideration for cochlear implants, and they found something consistent with kernicterus. I asked our pediatrician and he said ‘No, Brenda, he was never treated for jaundice.’ And I said ‘But does that mean he didn’t have jaundice?’

I was always told that his cerebral palsy was probably a result of neurotoxicity caused by the loss of his twin in utero. And I was beating myself up at the time about that. But something didn’t fit. So I went to our neurologist and said can you look at this MRI? And he said it’s consistent with kernicterus, and that Maclain was also presenting in ways that suggested kernicterus.

I remember the day I went to our mail box and got the letter that said it’s not this, and it’s not that, and that our best estimate, based on the evidence, is that it’s most consistent with kernicterus. I ran in the house balling to my husband Graham, because for two years I’d been blamed for this inadvertently—that it was because his brother died in utero, and I didn’t get to the hospital fast enough.

BLOOM: But how would you have known to get to the hospital?

Brenda Agnew:
I had an ultrasound on Monday and my twins were perfect. On Wednesday, one twin passed away, but I could still feel movement because Maclain was kicking intermittently. When I went to the hospital on Thursday, because I noticed less movement, the doctor said ‘Why didn’t you get here sooner?’ I said ‘I’m sorry, I have a 19-month-old at home with a broken arm, and I’m working full-time and I could still feel kicking.’ Until we got the diagnosis for kernicterus, I blamed myself that if I had gotten to the hospital 12 hours earlier, maybe Maclain’s damage would have been minimized.

BLOOM: How did you respond when you got the letter?

Brenda Agnew:
I thought are you kidding me? I come through surviving the death of a child, I have a son who spends three months in NICU, and now you’re telling me this could have been 100 per cent preventable if he got phototherapy? Phototherapy is a common practice. It’s cheap and effective and has no contraindications. This is not okay. I need to know what happened, why he wasn’t treated and what transpired. I had already gone to the hospital and pulled all of his records so I had a good picture of what happened. Then I began a conversation with a law firm.

BLOOM: I understand you learned that the hospital was operating under guidelines for treating jaundice from a 1985-86 handbook, with a couple of updates in the 1990s, that related to full-term well babies, not unwell, premature babies. So Maclain, in 2007, didn’t meet the bilirubin threshold for phototherapy.

Brenda Agnew:
He was 1,550 grams and the old phototherapy guidelines would have treated him with phototherapy if he was 1,500 grams. That’s the difference of 10 nickels. But even the old guidelines had a second page that suggested thresholds be lowered if the baby was exhibiting clinical symptoms of jaundice. Maclain was showing all of the signs.

BLOOM: I understand the hospital only updated their guidelines in 2010, because you brought a lawsuit.

Brenda Agnew:
Yes. I know of another family whose child had untreated jaundice there at around the same time, which led to kernicterus. But they were reluctant to file a law suit because they didn’t want to give up the relationships they had with the doctors at the hospital.

BLOOM: But from what I understand, those guidelines wouldn’t have changed three years later without your lawsuit.

Brenda Agnew:
It’s still to this day, it’s hard for me to read what happened. I’m going to get emotional now. If you look at the way phototherapy works, if it’s applied on the first day, it breaks up the bilirubin and gets it out of the system, preventing anything from happening. On the second day, it can reverse some of the neurotoxicity. If they don’t get to it till the third day, the damage is irreversible. When you look at the timeline they had, Maclain could have been a typical kid today, if his jaundice was treated.

BLOOM: How do you cope with that?

Brenda Agnew:
Our legal settlement was important. Did I get an apology from the doctor? No, I didn’t. I did get an apology from the hospital, through their lawyer. I felt satisfaction when they changed the guidelines because I was confident and hopeful that this wouldn’t happen to another family. That was extremely valuable to me. The other thing the settlement helped with was it gave us a big peace of mind, knowing that Maclain would have care for the rest of his life.

I felt a bit vindicated, that in all of this I was right. It doesn’t reverse what happened, but it made me feel like I did the best I could for my son, given the situation.

The other piece is what I do to help other families. That makes me feel better. Whether it’s PAL, or being involved with CP-Net, or speaking out and telling my story, that’s the stuff I use to cope.

BLOOM: What was your role with PAL?

Brenda Agnew:
I created PAL to bring peer support for families. I’ve had battles with depression and anxiety and I left work for a reason. The nice thing about PAL was that I could do it on a volunteer basis, as I was feeling well. I did it because it was important, but it was also self-serving, because it made me really happy.

BLOOM: Was your depression related specifically to what happened to Maclain?

Brenda Agnew:
Yes. It was identified as being kind of like a post-traumatic diagnosis. It was described as being a depression and anxiety that result from something so beyond your control, that there’s no resolution or closure to it. Somebody did this. Somebody could have stopped this from happening and they didn’t, and that’s a hard one to get over mentally.

BLOOM: As you’re talking, this reminds me of some mothers whose older children had brain injury as a result of severe illness or injury. In these cases, the parents took the child to emergency and the doctor told them the child was okay, and to take them home. The parents were beside themselves—because they knew something was seriously wrong. But they couldn’t convince the medical staff.  So they took their kid home, and then the child deteriorated and was re-hospitalized and diagnosed with a brain injury. Then they felt guilty that the brain injury wasn’t identified earlier. They felt betrayed.

Brenda Agnew:
Something that came out of our experience was that I couldn’t trust the medical profession. I could not in my heart trust anybody, and I knew that compromised a lot of relationships. I couldn’t believe someone would do the right thing medically, because they had let Maclain down. I didn’t know Maclain had jaundice as a newborn, but as a Mama bear, I knew something wasn’t right. I remember being hysterical at the bedside, and saying this is not okay. I understand where those moms are coming from. It’s like watching your child drown and not being able to go in and help them.

BLOOM: Is there a support group that is specifically for parents of children whose disabilities were preventable?

Brenda Agnew:
Not that I know of. I do belong to a U.S.-based group for kernicterus, but I’ve only met a handful of moms and it’s been through telling my story. I’ve had people approach me.

BLOOM: Is it helpful to connect with those parents?

Brenda Agnew:
It was helpful, but you get mad all over again. To be honest, I don’t want to meet anyone else, because it breaks my heart to know this is still happening.

BLOOM: I think when something is preventable, it’s a very unique situation. It’s different emotionally.

Brenda Agnew:
Yes. This wasn’t a legitimate mistake. There are babies who are born at 23 or 24 weeks who have many different interventions. Sometimes an intervention will have a negative consequence, but you’re in survival mode so you move forward. That’s very different from a blatant disregard of clinical symptoms and outdated protocols.

BLOOM: How would you advise a parent whose child’s disabilities were preventable from getting stuck in the injustice of it?

Brenda Agnew:
I always encourage parents that if they have something in the back of their mind, that they believe in their heart that something happened that wasn’t right, to contact a lawyer they trust to ask the question. They have the expertise to pull the records and bring in an expert who can say definitively whether this was a negligent act, or it wasn’t. For some parents who learn treatment didn’t breach the standard of care, that can help them turn the page. Okay, I needed to know that, thank you.

I always advise people to go to patient relations at the hospital and have an investigation opened, and to perhaps consider filing a complaint with the College of Physicians and Surgeons.

You need to right this wrong. It doesn’t have to be a lawsuit. You need to amend the way something is done so it doesn’t happen to another family.

BLOOM: I guess I’m thinking more if a parent is stuck emotionally. They may have followed up so that people are accountable, but they can’t get past the fact it happened to their kid.

Brenda Agnew:
That’s where the therapy piece comes in. You need to go through the feelings and emotions you’re having. When we settled our case I thought ‘Wow, okay, my mental health will be good, and I’m going to be great.' Then I had more anxiety and panic attacks in the six months after we settled than I did prior.

I think I thought in my mind this will fix everything. I thought after eight years of fighting, it will be done. But it doesn’t leave you with a resolution. You still have a child with special needs. When I realized it wouldn’t fix everything, I had to fall back on my coping skills: my psychiatrist, my essential oils, and reading.

BLOOM: How do you use the essential oils?

Brenda Agnew:
I always have lavender and peppermint with me. They help to calm me. And I read great books, the bestsellers. That’s my escape. I started to read before bed or in the morning with my cup of tea. I also got back to walking. I’ll go for an 8 kilometer walk and I’ll talk or vent the whole way.

BLOOM: Do you walk with friends or family?

Brenda Agnew:
Sometimes by myself or with friends or my husband. I did yoga for a period. Now I’m carving out five minutes a day, which is big for me, to do breathing techniques and mindfulness. When I’m stressed out, I recite all of the U.S. states in order alphabetically. I also love my red wine and Netflix and barbecue chips.

The other thing I do is volunteer. It’s like my exercise.

BLOOM: What kind of volunteering?

Brenda Agnew:
Wherever I think I have the capacity to help. I’ve volunteered at my boys’ schools and with our local hockey association. I’m the chair of our special education advisory committee (SEAC) board and I’m on the Burlington Accessibility Advisory Committee. I do a lot of work with CP-Net and CHILD BRIGHT.

BLOOM: And now you are working as a client liaison at Gluckstein, which is the law firm that handled Maclain’s case.

Brenda Agnew:
I remember having a conversation with my firm and saying ‘Guys, you need someone on your team that can help families through the process.’ I’m there to talk to someone if they’re questioning what happened to their child, but are afraid to ask a lawyer. I understand the emotions they go through and can help them understand terminology. And I provide resources.

BLOOM: Like the compassion fatigue day where parents listened to speakers?

Brenda Agnew:
Yes. I also find other ways to engage Gluckstein in the special needs community. For example, we now support the respite program called rEcess and Ability Online.

BLOOM: What is it like to be back at work?

Brenda Agnew:
I love it. I married everything together: the special needs population of which I’m a member, and the legal aspect which was a huge part of my life for eight years, and which evoked change, and I love being an advocate. I love helping people to find their voice.

BLOOM: So even though you said earlier that you still struggle with what happened, you sound like you’ve reached a really good place in your life.

Brenda Agnew:
I think I’ve probably been more my true self in the last year than I have been since Maclain was born. I still manage my depression and anxiety. Time does have its effect. I did what I had to do to get what my son needed, I took someone to task, and a hospital protocol has changed. That lets me walk around with a little less on my shoulders.

BLOOM: It bothers me to think that there may be other parents who will never know that their child has kernicterus, and that it caused their cerebral palsy.

Brenda Agnew:
In one of my fits of rage I’ve said I can’t believe in my heart that we are the only family with a child that had jaundice that wasn’t treated and walked away with a CP diagnosis. I have heard from other families in Ontario whose children have kernicterus, or suspected kernicterus.