In Baby and Me, parents craft a lullaby for hospitalized infant

By Louise Kinross

When a child is born premature or with serious medical problems, parents’ plans go out the window. Instead of getting to know each other in the relaxed and quiet safety of their home, parents sit at a hospital crib, unsure of how to interact with the newborn beneath the wires and noisy equipment.

While their baby is in intensive care or rehab, parents may miss some of the most basic bonding experiences.

For example, a mother attending Holland Bloorview’s new Baby and Me program, noted that when she lay down beside her child on a mattress in the program, it was the first time she’d ever snuggled in bed with her baby. The baby was seven months old.

One morning a week, inpatient babies up to 18 months and their moms or dads meet in Holland Bloorview’s music therapy room for 45 minutes of creative arts psychotherapy, which includes art- and music-making.

“We started the group to facilitate creative and playful opportunities between caregiver and child,” says Eunice Kang, a registered psychotherapist and music therapist at Holland Bloorview. “We offer a means of coping with trauma and help parents connect to their infants through song writing and creating art. It’s an opportunity to stop and take stock of their journey so far—to talk about the difficulties and celebrate the achievements.”

The session begins with parents playing soothing bells of different pitches. They then choose to compose a personal lullaby for their child, called a "song of kin," or paint and decorate a piece of canvas to honour their baby.

Eunice and Andrea Lamont, also a registered psychotherapist and music therapist, learned the "song of kin" technique from Dr. Joanne Loewy. Last year they attended Dr. Loewy's continuing education program in the neonatal intensive care unit at Mount Sinai Hospital in New York City. They then worked with Shawna Perkins, Holland Bloorview's therapeutic playroom coordinator and art therapist, to adapt the techniques for the growing number of infant patients we see here.

For the lullaby, parents are asked to choose a favourite family song, then work with Eunice and Andrea to create meaningful lyrics for their child. “The baby has experienced a lot of stress being in new hospital environments, and we know that listening to Mommy or Daddy sing to them will help the baby regulate their emotions and bond,” Eunice says. “While we’re making the lullaby, we listen to the family’s concerns and issues. It’s a quiet time, with no beeping alarm sounds or interruptions, that can also be emotional and cathartic for parents.”

In addition to the lullaby, parents and babies work on their art canvas with Shawna, adding patterns and textures and photos of the baby. At the end, Shawna takes a picture of the child and superimposes it on the canvas, adding the lyrics from the family's lullaby as a border.

The facilitators play instruments to accompany parents singing their lullabies. “With their consent, we record the lullaby and send it to their e-mail or phone,” Eunice says. “Some of the families tell us they cry the first time they hear it, and they cherish the moment they share it with the baby.”

For more information on the Baby and Me program for inpatients, please contact Shawna Perkins at ext. 6268. This project is funded by donors through Holland Bloorview Kids Rehabilitation Foundation.

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Rude words from doctors and parents harm care

By Louise Kinross

In 2015, a team of Israeli researchers studied the impact of rude comments by another doctor on medical teams while they did a simulation of caring for a very sick premature baby.

The words, from an expert the participants were told was observing them, included that he was “not impressed with the quality of medicine in Israel” and that medical staff in Israel “wouldn’t last a week” in his NICU in the United States.

Twenty-four NICU teams participated and teams were randomly assigned to hear the expert’s rude comments or to hear his neutral comments. The teams that experienced the rude comments scored less well in their diagnosis of the baby’s problems and in how they performed tasks like resuscitation and asking for the right lab tests. They were rated by two judges. “Rudeness exposure [by a medical superior] can adversely affect the cognitive functions required for effective diagnostic and medical procedural performance,” the researchers conclude, and may be a source of devastating medical error.

In a new study published in Pediatrics this month, the same scientists look at what happens when an actress, playing the role of the baby’s parent in a simulation, belittles the medical team. In this study, four Israeli medical teams performed five emergency scenarios. Three of the teams were confronted by a mother who accused them of misdiagnosing her child, threatened to move the child to another hospital, and said: ‘I knew we should have gone to a better hospital where they don’t practice Third World medicine!’ The control team was not exposed to rudeness.

Two teams were given a preventative intervention—one was a cognitive bias-changing game and the other a therapeutic writing exercise. The 20-minute computer game before the simulation showed angry and happy faces and provided feedback that made them less sensitive to negative emotions. The writing exercise involved having one team write about the rude event after it happened. The teams that experienced the rude comments from the mother scored less well on how they diagnosed the baby and intervened, as well as how their team shared information and workload. The researchers showed that the pre-simulation computer game reduced these negative effects on care, while the post-intervention writing exercise was ineffective.

BLOOM interviewed lead investigator Dr. Arik Riskin, a neonatologist at Bnai-Zion Medical Center in Haifa, Israel, by e-mail to learn more.

BLOOM: Why was the study about parent rudeness needed?

Arik Riskin: The study is important because it increases awareness that there are many factors related to human behaviour, relations and communication between [health workers] and between them and their patients or families. We are not robots, we are human beings with feelings, and we react to social situations and behaviours as do other humans. But, in the case of [health workers], the impact can be devastating, because we are dealing with patients, treatments and life-and-death decisions. The remedy starts from awareness and recognition that there may be a problem with this issue. Awareness is important for us as medical team members, but it’s also important to our patients and their families and to healthcare management authorities dealing with ways to decrease medical errors and improve care and patient safety.

BLOOM: How did you define rude behaviour?

Arik Riskin: Rudeness is defined as insensitive or disrespectful behaviour enacted by a person that displays a lack of regard for others. Rudeness should be regarded as a form of uncivil behaviour. Workplace rudeness may include insulting comments, denigration of a person’s work, spreading false rumours, social isolation and bad manners.  Rudeness, particularly with respect to speech, is necessarily confrontational at its core. What constitutes rude speech depends on the culture, the setting and the speaker’s social position in the culture. Rudeness is primarily concerned with violations of human dignity or respect.

BLOOM: What are common causes of rude parent behaviour in the NICU?

Arik Riskin: I would pay a fortune to find out the answer to this question. However, I’ll share with you some of our insights from our experience. Many times rude behaviour is a late response to an incident or some stress (and the NICU experience is very stressful) that the parents experienced before, sometimes even a few days or hours before.

The rudeness is not necessarily turned toward the [health worker] that was involved in that previous incident, and may be unrelated to the parent's infant or to the NICU or hospital. It can be some argument between the parents or in their larger family.

However, when it hits the physician or nurse out of the blue, they start thinking ‘What have I done wrong?’ This starts the process of rumination—thinking over and over ‘Why did I get this insult?,’ drains their cognitive resources and eventually can affect their ability to treat patients.

BLOOM: What were the main findings on rude parent behaviour?

Arik Riskin: Rudeness has robust, deleterious effects on the performance of medical teams.  Moreover, exposure to rudeness debilitated the [collaboration] recognized as essential for patient care and safety.

BLOOM: How does rudeness impair a medical team’s ability to provide good care?

Arik Riskin: Teams exposed to mild rudeness by the patient’s mother had diminished team performance with respect to outcome parameters relating to diagnosis and intervention, and process parameters including team information and workload sharing. These findings not only replicate our earlier findings demonstrating the [negative] effects of rudeness expressed by a senior colleague on individual medical performance, but extend them by demonstrating that similar effects are elicited by rudeness from other sources and are manifested at the team level.

In this study, we also demonstrated that these deleterious effects of rudeness are not restricted to individuals, but also to teams. This is important because—based on the assumption that teams can often overcome and compensate for individual performance limitations—medical work is increasingly structured around teams. Our findings demonstrate that when rudeness is present, the very collaborative processes that generally enable teams to outperform individuals may break down.

To the extent that rudeness impedes team helping and workload sharing, teams may not be able to deliver the heightened level of patient care that practitioners have come to expect from them.

BLOOM: Why was the computer game some teams played effective in reducing the negative effects of rudeness, while the writing exercise others did wasn’t?

Erik Raskin: Prior to the simulation, teams in the preventative cognitive-bias modification intervention engaged in a 20-minute computer game in which they looked at a series of morphing faces, were asked to move a cursor to indicate whether the emotion was more of anger or pleasure, and then received immediate feedback on their choice.

During this game, the computer determined the participant’s threshold to threat—that is, the angry faces—and then gave them feedback designed to raise this threshold and ‘immunize’ them from devoting substantial attention to minor threats.

Examination of the manipulation checks showed that those in the computer intervention viewed the mother as ruder than those who experienced the rude comments with no intervention.

As designed, the computer intervention ‘immunized’ participants’ medical and therapeutic performance and teamwork by shifting their attention away from the implicit threat posed by the mother, likely preserving cognitive resources for the tasks at hand. The computer intervention operated not so much by mitigating the appraisal of rudeness, but by making team members more resilient to it.

The teams who did the writing exercise worked on the simulation with rudeness first, and then went to a debriefing room where they were asked to write a paragraph or two about how they thought the mother of the infant felt when it seemed to her that the team was unsuccessful in treating the baby.

By the end of the day, those in the narrative group did not view the mother as ruder than controls. These results suggest that while writing about the experience from the mother’s perspective facilitated participants’ positive reappraisal of her rude behaviour, it failed to help them overcome the cognitive disruption caused by it.

BLOOM: Is there a danger in making health workers less emotionally responsive to families?

Erik Raskin: As mentioned in my answer above, the computer game didn’t make health workers less emotionally responsive. On the contrary, it just ‘immunized’ them, thus changing their focus and less disturbing them in their work.

BLOOM: Are there times when a parent questioning the care is appropriate?

Erik Raskin: Parents questioning the care is always appropriate. They have the right to ask questions. In my opinion we can use it as a means to help us do better, think again about the diagnosis, re-think treatments given and other options of treatment. Generally, this is a good interaction with parents, and many physicians and nurses, like me, see parents as our partners in the goal of giving the best treatment to their children, helping them survive and grow, and go home, as healthy and happy as possible.

There is a big difference between real questioning and seeking explanations in the best interest of your baby, and rude comments, insults and blaming of the physicians and nurses. [In the latter case], parents throw all their stress and frustration (because the infant was born prematurely and is very sick) on the medical team that is trying its best to save their infant, give life and treat as best as they can.

There is also the issue of timing. We allow parents in our NICU all day long, including in rounds, but parents must understand that we also need to treat, to do resuscitation and other procedures, and to look after other babies. So we are not all the time available to answer every question. They should be patient and understand that sometimes we simply don’t have time to talk to them immediately, and we’ll be happy to do so later when we have time.

So, please don’t start shouting at us, making rude remarks about how careless or less attentive we are. This makes us feel bad, makes us ruminate about ‘What have we done wrong?’ and drains our cognitive resources in a way that eventually hurts our performance or even causes us to do unintentional harm.

BLOOM: A media story about your study includes a quote from a doctor who says that outside the NICU, parent rudeness is often a legitimate reaction to poor care and system problems. Is it possible that this could also happen in the NICU?

Arik Riskin: Sorry, but I disagree with this statement. Rudeness is never a legitimate reaction—not in the NICU, not outside the NICU and not anywhere else. This is not a nice way to express your concerns. It is a totally unacceptable form of communication among people in general. It is an act of incivility that is no less harmful than aggressiveness or bullying. 

Parents should and can express their concerns about treatment, and if they think it’s poor care, they should tell this to the medical team. If this doesn’t help, they can talk to their superiors, and if this doesn’t help, they can ask to go and get the treatment in another facility. The problem is that many times it’s not poor care, but mainly frustration on behalf of the parents because their infant is really sick and doing badly despite all the treatments given to him or her.

But, I’m ready to hear this from parents, too, and I’m not ashamed to consult another expert and seek another opinion, as long as it is for the best care of my patients. Unfortunately, many times nowadays parents are confused by a general atmosphere that is very criticizing [about] everything. This is reinforced by the media ‘looking for headline news,’ attorneys looking for law suits, and family members (who think they are supporting the parents by questioning everything, but cause the parents lots of confusion and eventually mistrust in the care their baby gets.

Parents need to have some trust and faith in the team taking care of their baby in order not to lose hope, which is so important for them, and us too. Parents should ask questions, should learn and read about their infant’s condition, and should inquire about the diagnosis and possible other treatments. But at a certain [point] they need to have some trust and confidence in us as medical team members, coming days and nights to do our best for their babies.

BLOOM: Are there differences in how parent rudeness vs medical staff rudeness impacts medical care?

Arik Riskin: Both are as bad, having devastating effects on individual team members and on medical teams’ performance as a whole. We haven’t compared both sources at the same time in the same settings, so I can’t guarantee which is worst. But based on our studies and the studies of Professor Erez and colleagues on rudeness in other settings, both have very bad influences on the [person targeted] and on those who witness it.

BLOOM: What advice would you give parents?

Arik Riskin: Try to be as patient and polite as possible. We understand that you are in real [distress], and are there for you. We even understand when you are not so nice to us because you are sad and worried. But, being sad or worried and even frustrated doesn’t necessarily need to make you rude to us.

Being rude simply doesn’t help and might actually cause the opposite by distracting us and disturbing us from doing our best. 

I have worked with many parents over the years and those that had a positive attitude to all that was happening, despite all the stress and hard times they were going through, coped much better than other parents. I believe that this attitude gave them hope, which is so important in tough times. I think they may have also been more open to the support we are willing and trying as best as we can to give to all the parents of the sick infants and preemies we’re taking care of.

BLOOM: What measures should hospitals put in place to try to reduce rudeness by senior medical staff or among medical peers?

Arik Riskin: Awareness is also important among team members, educating us to treat each other with dignity and respect. The days when a senior physician or charge nurse could be rude to a resident or trainee are over…not because it’s impolite and unfriendly, but because it [endangers] our patients.

By highlighting the impact that adverse social contexts may have on team-level [collaboration], our findings provide the foundation for a wide range of interventions aimed at enhancing patient safety. Our results suggest that instituting protocols and procedures aimed at bolstering the defenses of medical teams to the cognitive distraction and drain elicited by rudeness can help mitigate the devastating consequences of these events, even when they can’t be prevented.

BLOOM: Do you feel there’s a role for narrative writing and reflection, even though the intervention used in your study didn’t show a benefit?

Arik Riskin: Yes, I would definitely not quit this possible route of interventions, especially not reflection, which is an excellent learning tool for medical teams.

BLOOM: Have you considered doing a study to look at the impact of rudeness by medical teams on parents of premature babies? Some parents have traumatic experiences related to being talked to in a callous or dismissive way, or in hearing their child being talked about in a degrading or disrespectful way.

Arik Riskin: This is an important subject, which I’m sorry to say still exists as a problem. I haven’t done research on it, but I know that many others have studied this important aspect of communication.

Teaching physicians and other health workers to talk nicely, gently and politely with parents is no less important than the medical treatment we provide. I recall my first lesson in neonatology as a resident. The director of our NICU then, the late Dr. Berger, taught me. We went to talk to a mother after a delivery. The mother was very stressed and frustrated even though her baby was improving. Then Dr. Berger sat with me and told me her insights about how mothers feel after delivery, and how we need to talk to them and support them. She told me this was my first lesson in pediatrics and in neonatology—How to talk to a mother—and it was more important than any other lesson I’d learn.

I carry this important lesson with me and pass it over to my students, residents and fellows. I still find talking to parents the most challenging, but also the most rewarding, part of my work. I look at them as our teammates in the long, long [journey] we have to go together to make their infant survive and to be as healthy and happy as possible.

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For parents of preemies, rehab is a confusing 'new world'

By Louise Kinross

Children’s rehab is “a whole new world” fraught with stress and confusion for parents of preemies who are moving on from neonatal intensive care, according to new Holland Bloorview research.

Based on interviews with 18 parents of preterm children with cerebral palsy, lead investigator Marilyn Ballantyne found parents commonly feel lost, unsure of what to expect or what services to ask for, and vulnerable.

The goal of the research is to identify how to best support parents during this process.

Parent suggestions for ways to improve the transition included recognizing the child as a whole, rather than separate parts of a diagnosis; better communicating what to expect; providing consistent information on a child’s diagnosis and appropriate services; and connecting parents to consistent health providers, including one that plays a navigator role over the long-term, and other parents of children with disabilities who can provide support.

BLOOM interviewed Kyoko, a Holland Bloorview family leader who worked with the research team to develop the interview questions for parents. We wanted to hear about her experience as the mom of twin boys born at 30 weeks gestation almost 14 years ago in Japan. At the time, Kyoko had three other children under the age of 10 at home.

BLOOM: Tell us about your twins.

Kyoko: They spent 99 days in the NICU, and one of the boys had health concerns. There were minor ups and downs with breathing, fluid intake, bowel movements and oxygen level in the blood, but they were monitored by machines. The nursing and medical staff were very supportive. I was anxious, to some extent, but every time I went to see the boys the staff gave me hope. There was a culture of acceptance created in the way the nurses practised. They were always professional, loving, calm and quiet. If a monitor went off due to a lack of oxygen, they would smile and gently pat my son on the back and say 'You forgot to breathe.'

We were only allowed to visit between 1 p.m. and 9, but that was okay because I had older children at home. All of the doctor visits or special appointments were done in the morning. The nurses kept a daily journal in a scrapbook for each patient documenting the services they received and how much milk they drank, how long they slept, and any activities. It was accompanied with photographs. It was a precious record and it would be ready for us when we got there to catch up.

BLOOM: What were you told in terms of their prognosis?

Kyoko: The day of discharge the chief pediatrician explained that they might have possible delays in speech, hearing, gross and fine-motor skills, because of their birth, and it had to be monitored. But then he said "Raise them as perfectly healthy children." I had previous experience raising children, so I thought 'okay.'

BLOOM: What was it like when they came home?

Kyoko: Full of surprises. We didn't anticipate how hard it would be after they came home, and the number of serious emergencies they would have. They developed life-threatening respiratory problems when they picked up the common cold from my other children.

The pediatrician had given us a brief explanation that they might have delays in development. In our case, breathing was the major issue. We weren't told what might happen, or what kind of therapy would be good for them, or which doctor to see for breathing.

I wish we'd had more information, but it was probably hard for the doctors to predict how the boys would be with three older children bringing home colds. One of our older children's classmates was battling a serious illness and her mother was very empathetic and helpful and played a navigator role for me. She helped with where to go and which practitioner to see and what needs to be done. She suggested the boys should be seen at a different hospital that had a 24-hour emergency unit.

BLOOM: How did you manage all of this with two infants and your older children?

Kyoko: The period between the NICU and rehab was very, very stressful. I was juggling three to four hospitals and running from place to place. We were dealing with different health issues as well as all of the regular checkups. The hospitals were spread out and the taxi bills were enormous (though still better than facing parking problems).

It was a maze of medical services and not knowing what to get and where. When I look back, there was a disconnect in that period between the NICU and the rehab hospital. You had to do everything by yourself and find the specialists. All of the diagnoses and care and services provided in the NICU had nothing to do with the problems the twins developed afterwards. In a way we were lost and thinking 'why is this happening?'

BLOOM: At what point did you suspect that one of your boys might have a disability?

Kyoko: We were back at the hospital often for treatment for common colds, and at one of those visits, my son was diagnosed.

BLOOM: What were you told?

Kyoko: It was very straightforward. He has cerebral palsy and he has limited hand and leg movement. But he could hear and had eye contact and was able to communicate. I couldn't really understand fully what kind of disability he would develop. I asked 'Will my son walk?' The doctor said the goal of therapy is to maintain what he has and to get the most out of what he has. For me, the word 'maintain' stuck in my mind and as I look back I see how this word helped me to balance between reality and ideals.

That word 'maintain' gave me the sense of a process, that it's not the goal of being able to walk like an able-bodied person or being cured, that there wouldn't be a drastic change. 'Maintain' doesn't imply an ideal that a child has to reach. That's why I liked your article 'The Enough House.' For some kids, enough is enough. It was a very simple message of 'don't lose what he has and then help him to grow'. I was allowed to see him as an individual and focus on him and what kind of possibilities he's blessed with and we were yet to find.

BLOOM: Did you then go to rehab services?

Kyoko: Yes, we went to a rehab service for a year before we moved to Canada. My son received occupational therapy and physical therapy for 1 1/2 hours each week and it was conducted in a big room where I could sit and chat with other parents and that was comforting to me. One of the parents recommended that I take my son to see an energy therapist and he helped my son tremendously in terms of speech. But we really just went to rehab for therapy. There was no cafeteria, no playground, no Ronald McDonald playroom. No mental support, or support for siblings.

BLOOM: In Marilyn's research, parents said they wished they'd been given more information about what to expect. Was this an issue?

Kyoko: I wish we'd had more information about spasticity. He was able to stand up against the wall with both feet flat on the floor when he was 18 to 24 months and we were waiting for the moment when he'd take the first step, but he never did. There was a lot of frustration about why he tends to fall or why he can't do this or that. I guess even though the doctor said the goal is to maintain, somewhere in my mind I was anticipating the next step and wouldn't it be nice if he can walk.

It's interesting, but it just came out of my mind that it seems like there are two pieces of me: One is accepting and another one is thinking 'maybe.' Because we were never clearly given a prognosis, a part of me was thinking that maybe something will change. I wish we'd understood more about spasticity and how it affects his overall movement. We were never told that it was something that wouldn't dissipate. We were going through rigorous therapy and exercise and stretching in the hopes it would help, but this is the mystery of spasticity.

BLOOM: You then came to Canada and your kids were in our Play and Learn nursery and then our integrated kindergarten. When you think about new parents or preemies transitioning to Holland Bloorview, is there any information we don't currently provide that would be helpful?

Kyoko: I think it would be helpful for the parents to be given a list of every therapy that is available, not just here, but private PT and OT and speech providers in the community. Because of the wait to get services, and because therapy is three months on and three months off, it would be good to know what other services are available.

BLOOM: What about connections with other parents?

Kyoko: I was lucky that in Japan a mother helped me tremendously and then when we moved to Canada, a mom in our neighbourhood whose daughter had CP also helped me. Then, much later, when my son was graduating from the Bloorview school, the physiotherapist suggested I speak with Dawn Lunan, who was a parent liaison at the hospital, and that was helpful.

I'm not sure what's most helpful for people. Whether you bring a group of parents together to talk, or whether you have a parent reach out to them individually one on one. I go to the Parent Talk group for cerebral palsy. In February we spoke about how in the autism group there's a very strong network. But for some reason, the parent support is still very weak in the CP group. There were only five parents at the session. I wondered why more new parents weren't coming out to these sessions.

BLOOM: I think sometimes parents early on are overwhelmed.

Kyoko: Yes, I understand that feeling of 'you want more information' and 'you don't want more information.' For me, I like to meet with other people who are going through different stages of life. It helps prepare me for what to expect with my son.

BLOOM: Is there something you feel we could do better at Holland Bloorview?

Kyoko: Holland Bloorview already offers many workshops and presentations on diverse topics related to childhood disabilities.

Family support I think can be done better. For example, for the siblings. We're all supportive and trying our best, but to be included in the care is the key. I brought the older kids to the swimming classes downstairs so they could get familiar with therapy and disability in general. I think it would be nice to have more activities for families where you can bring all of your children.

BLOOM: What about respite?

Kyoko: We didn't think about having respite early on. We were very close to each other. We preferred to go out and do something as a family.

BLOOM: How is your son doing now?

Kyoko: In some areas we've been very successful in bringing him up to the surface and he's become truly him: funny, creative, compassionate, a good human being with limited physical abilities. He is able to type his school assignments and play video games with a regular controller. He uses a manual and power wheelchair and is in a regular school program.

BLOOM: What advice would you give other parents?

Kyoko: Look at your child and accept him or her as he or she is, and bring up all of their potential by using therapy and social connections. And even if your child doesn't achieve all of these things, still, she is she and he is he, and there are moments of joy.

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This bereaved mom lives with no regrets

By Louise Kinross

When her son Jordan was 10 days old, doctors told Cheryl Runstedler he was going to die. Jordan was born at 24 weeks weighing one-and-a-half pounds with many disabilities and medical problems.

Instead, “I had him for five years,” Cheryl says, and until his death last September, she and her husband Joe filled his life with fun. “I have over 100 videos of him and thousands of photos. In March before he passed away he was granted a Sunshine Foundation wish and we went to Disney with him. And the week before he passed we took him to the CNE and he went on the Ferris wheel. We were all about him loving his life and having fun.”

BLOOM spoke to Cheryl about how she approached life knowing that Jordan would likely die young.

BLOOM: Tell us a bit about Jordan.

Cheryl Runstedler: He was in hospital for five and a half months and had multiple surgeries. He had a brain injury at day three. At three months he was diagnosed with profound hearing loss and he had cortical visual impairment, which affects the processing part of vision. At seven months he was diagnosed with cerebral palsy. He came home on oxygen and had a lot of metabolic issues that required medication and monitoring. I used to say that [cerebral palsy] was the easy part. We knew we were going to have a special-needs child and we just wanted him to live.

BLOOM: What was most challenging?

Cheryl Runstedler: It was dealing with other people, the doctors especially initially. Trying to get them to understand him and not underestimate him and not just assume he’s not worth it. The medical profession looks at everything needing to be perfect. I used to tell doctors everyone has a disability, some are just more visible. I didn’t want Jordan to feel like he was broken or that we were disappointed. We felt blessed to have him.

Early on I got rid of any negativity around me—any doctors, nurses or therapists who were negative. I surrounded myself with a core of doctors—the complex-care doctors at SickKids and a neurologist—who knew and saw him as a little boy. Then when he became an inpatient, I could call on those doctors.

BLOOM: What kind of things did Jordan enjoy?

Cheryl Runstedler: He loved to play. My husband would do wrestling moves with him on the bed and he loved that. He liked the sandbox and swings at the park. We took him everywhere. We went to the grocery store and they played loud music and I’d dance with Jordan in the aisles.

Once he had his cochlear implant and could hear, he was quite fussy about watching cartoons. He played with our neighbours—they have a two- and three-year-old and we’d bring him over to their house. We did lots of neighbourhood and city stuff. He was very smart and very particular and stubborn and also mischievous. He had a huge pouty face and a googly little grin.

BLOOM:  Was he accepted in the community?

Cheryl Runstedler: We got a very thick skin in the beginning. When he got hearing aids I made a point of getting molds that were the most colourful things you’d ever seen. I thought if people are going to stare, I want them to stare at fun stuff.

BLOOM:  How did you approach therapy?

Cheryl Runstedler:  I told therapists that if I can’t incorporate this into our day-to-day life, and in fun and play, I’m not going to do it. They’d look at me with shock. I got rid of a couple of them. One said Jordan was lazy. I said ‘No, he’s not lazy, he has severe low muscle tone.’ 

I wasn’t trying to fix him. He had a brain injury and I wanted him to enjoy his life. That was more important to me than therapy. 

When Jordan was a baby I went to hear one of your BLOOM speakers. And there was a young woman there, Crystal, who said that when she was young, she didn’t know swimming was for fun. She thought it was just therapy. It broke my heart, because I didn’t want Jordan to ever feel that way. That was one of my turning points. When you’ve almost lost your child, it changes your focus.

BLOOM: I heard that you had lots of fun with Halloween.

Cheryl Runstedler: We dressed him up in the NICU as a Chippendale dancer. He was naked with a diaper and a bow-tie. He missed two Halloweens because he was at SickKids, but the year before he died he was a pirate. I painted a beard on his face and he wore dreadlocks and nail polish. This year I wanted to make him a bobble head, because he has no head control. We made fun with the situation, because that’s the kind of people we are.

BLOOM: What advice would you give other parents?

Cheryl Runstedler: For me, I just loved my kid and I didn’t care what people thought of him. I didn’t care about the stares. I didn’t get offended because I took everything with a grain of salt. Life is not perfect. I grew up on a farm. I had a simple upbringing and my parents instilled in me that each day is a blessing. We don’t know how long we have. 

Before I had Jordan, I’d had a number of miscarriages. It took four-and-a-half years to get him. I was on upside-down bed rest when I was pregnant, and it was a huge struggle to have him make it. Nobody chooses this life but it was the life we were given, so we had to make the most of it.  

Life was good and every night my husband and I would turn to each other and say: 'We’re so blessed to have him.' Even now, as I’m going through the [worst] part of raising a child—having a child pass—I tell myself 'We could have only had him for 10 days, and I had him for five years.' I have so many life memories of things we did together and these are the things I cherish now.

Jordan with a "mini-me" made by Feel Better Friends  

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How does disability enter into care decisions about preemies?

By Louise Kinross

Last week I read this post called One Size Does Not Fit All about “shared decision-making” between parents and medical staff in a neonatal intensive care unit. It’s written by a Winnipeg neonatologist. Kate Robson, who is the parent coordinator in the NICU at Sunnybrook, posted a link to the piece on Facebook.

In looking at challenges to agreeing on whether intervention should be offered to a small preemie, the doctor gives an example of a woman who is in advanced labour at the hospital at 24 weeks. At 24 weeks parents are given the option of resuscitation or no resuscitation. 

The doctor notes that he has about 15 to 30 minutes to share information and a pamphlet.

 
“…we do our best but don’t for a minute think that shared-decision making has occurred.” he says. “I don’t believe this is possible unless the family has prior experience with a preterm birth or perhaps is a health-care provider working with newborns or children with disabilities themselves.”

I posted a comment saying that he makes a good point that parents with no intimate experience with disability will have a hard time predicting what the experience will be like if their child is diagnosed with disabilities. But so will health providers who've had little exposure, over time, to families raising kids with disabilities. 

“In the same way that a parent who’s had no firsthand/intimate/long-term experience with disability can’t accurately predict what that experience will be like, neither can a health provider who lacks that kind of exposure,” I wrote.

Annie Janvier, a neonatologist at the CHU Saint-Justine Children’s Hospital in Montreal, responded to my comment on Kate Robson’s Facebook page).

“…and providers only see children and families when they are not at their best (sick, in hospital, ER...),” Annie writes. “They do not see them during their family life, at school or birthday parties. In the literature, you will find we, physicians, are very pessimistic when it comes to disability. 

“When I hear another physician/nurse/provider tell me ‘parents have no clue what disability is’ I often tell them ‘I don't think you do either.’ We have to teach families about adaptation, resilience, coping. While other areas of medicine (cancer, amputees, spinal cord accidents, colostomies) have examined that, we haven't. Parents want to know about happiness, functionality, family life, friends and relationships, love, regrets, etc., not a list of diagnoses.”

Thoughts? 

Katharina Staub, outgoing executive director of the Canadian Premature Babies Foundation, posted this comment.

“Having given birth to preterm twins at 27 weeks of gestation has been a life-changing experience for me. I remember the prenatal consultation very well, even seven years later. It was full of statistics, negative outcomes and I was alone late in the evening. I was 25 weeks—the consult left me bewildered, fearful and stressed. It was actually not a discussion, I was given information.

 
“‘Partnering With Parents, One Size Does Not Fit All.’ I do agree with this title. Each family is different, comes from a different place, has different values and expectations when they end up in a delivery room unexpectedly at 23 or 24 weeks gestation. 

“I think what needs to be looked at is what shared decision-making means. What does it mean to provide ‘pertinent information’ to families? Is it giving a lot of statistics? How do health-care professionals decide what information is to ‘be delivered’ ? 

“I believe that in a shared-decision model, there is a discussion about this baby—the family’s hopes and dreams. This does not have to be a two-hour discussion, but knowing about the family, their hopes and dreams, will help in guiding the ensuing discussion. Do we need to discuss all potential outcomes at this time? I don’t think so.

“A number of parents and I have written an article on this topic in June, 2014 in Acta Paediatrica: Our child is not just a gestational age: A first-hand account of what parents want and need to know before premature birth. The recommendations we make to health-care providers are as true today as they were then.”

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'I don't want any parent to feel alone'

Kate Robson is parent co-ordinator for the Newborn Intensive-Care Unit at Sunnybrook Health Sciences Centre. The new 41-bed unit – which opened last year – cares for babies born before 28 weeks as well as newborns with other medical issues. Kate’s ties to Sunnybrook go back six years when her daughter Maggie was born at 25 weeks (photo above) and was an inpatient for over five months. Her position in the unit as a parent supporting families is a new one. Thank you to Frank Gavin, former chair of the Canadian Family Advisory Network, for letting me know about Kate! Louise

'I don't want any parent to feel alone'

BLOOM: Describe your role.

Kate Robson: My main priority is to work with families and be there for them as a support – and what that looks like depends on the family and what they need. For some families I’m someone they can talk to and bounce ideas off. I help other families navigate the system and connect them to resources in our hospital and elsewhere. I do a lot of visiting, walking the floor and have regular events to connect the parents. Every Thursday is a standing invitation at 1:30 and I bring treats and it may be social or we may bring in a speaker. We try to give people an opportunity to celebrate because there are lots of reasons to celebrate. Because our families have single room units, it’s even more important that I connect them so they don’t become isolated.

BLOOM: What are the greatest challenges for parents?

Kate Robson: Uncertainty. Before my daughter was born, I assumed there were more black and white answers when it came to diagnosis and predicting the future. Learning to live with the gray areas is difficult for every family. For many, everything was going lovely with their pregnancy and then they suddenly descended into this medical abyss. So it’s very surreal. There are feelings of isolation – that your experience is different from what you expected and from what everyone else around you is going through. For families who are here a long time, it’s hard to manage on a practical level – being away from home, and with all of our rules and regulations in terms of infection control. This experience changes you. It changes the way you look at the world and your perceptions of control and safety.

BLOOM: What was your experience of having a baby who needed to be in the NICU?

Kate Robson: Maggie was born at 25 weeks at 500 grams – the same weight as a block of butter. Everything was fine and then my blood pressure skyrocketed and they realized that a problem with the placenta was preventing Maggie from growing. I had a c-section and she had a very rocky first three weeks of life: there were many suspected problems and she had to have a surgical procedure on her heart. All the drama of ‘is she going to make it?’ was front-loaded in the first month.

BLOOM: I sat in an NICU waiting room once and listened to parents talk about how they were being pressured to withdraw care from their baby because the probability of disabilities like cerebral palsy was high. One mom said: “I know my son may have CP, but he’s my son!” I wondered how much personal experience with disability the NICU physicians had. Was withdrawing care ever suggested as an option for Maggie?

Kate Robson: No. I think the idea of informed decision-making is a lot more complicated than we thought. Once a parent has asserted his or her decision, then we need to create a judgment-free zone and our job is not to question the value of the child’s existence or the value of the parent’s decision. We need to put that child on the path to the best life possible. Because people who work in the NICU are used to trauma, it can limit our world view. We’ve seen the worst of the worst and it may colour our perceptions. We need to support people to make their own choices. That’s where I love families coming back to us and sharing their experience and ideas on how we can improve.

BLOOM: Tell us a bit more about your stay in the NICU.

Kate Robson: The first two months were focused on survival and stability. They were great about helping us hold Maggie and do ‘kangaroo care.’ This is holding your baby skin to skin against your heart. It’s the closest you can get to having them back in the womb. Your body will regulate their temperature and there are all kinds of benefits in terms of growth and brain development. Each room has a kangaroo care chair – which is easy to get in and out of and makes it comfortable to hold your baby, especially with a ventilator – for hours at a time. You start with your baby in an incubator with lots of stuff - ventilators and things to hold IVs - and as they grow the stuff goes away and the machines get smaller. It becomes easier for parents to play a role (although our involvement is encouraged from the start). The baby moves from being tube-fed to being breast- or bottle-fed.

BLOOM: Does Maggie have any disabilities?

Kate Robson: No, she doesn’t. She’s going into Grade 1 and seems to be doing fine. Babies who are very small for gestational age tend to be a bit smaller and what’s difficult now is watching her deal with comments and questions about her size. She’s had some experiences with bullying. As a parent, I still find it very anxiety-producing to go into a new clinical space and have her assessed. I’m always waiting for everything to go wrong.

BLOOM: Do you think it’s hard for parents in the NICU whose children have been diagnosed with disabilities to share with you, knowing your child doesn’t have long-term issues?

Kate Robson: We’re very fortunate and in many ways Maggie has been an easy kid. That’s not what always happens. But I don’t think other parents would trade their kid for mine. Sometimes I have a bit of almost survivor’s guilt, thinking ‘Am I the person they want to talk to?’ But I’m only one person. I have one story and I can’t be the answer for everyone. We have a lot of very gifted parents we can connect people with through our follow-up clinic. It’s so important to connect parents.

BLOOM: What do you hope to achieve through your role?
Kate Robson: My main goal is that I don’t want any parent to feel alone – whether in those early days or 10 years down the road.

BLOOM: In what ways could Sunnybrook’s NICU improve?

Kate Robson: I think in peer mentorship, in early education with families, and in really strengthening the relationship between caregivers and families, although I think we have a strong base there. I’m one parent voice, but I’d like to bring more and more families in and engage them and ensure there are diverse parent voices.

BLOOM: When you hear from graduate families, what do they want you to focus on?

Kate Robson: They want the experience of care to be the same, even if they can’t always have the same caregivers. They don’t want people telling them different things all the time. I think we have to find creative ways to help families feel like they have choices. They’re in a situation where a lot of choice has been taken away and we can’t fix that. So when it’s possible to make choices, we have to give them the opportunity and honour those choices. I think we also have to do more to support families who are transitioning home. That’s how I felt and that’s the feedback we get from families. I think peer support could be a cost-effective way to help and a lot of times the best help comes from people who’ve been where you’ve been.

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