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

By Louise Kinross

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

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

BLOOM: How did you get into this field?

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

BLOOM: Wow. What was your first job there?

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

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

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

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

BLOOM: What is your research focused on now?

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

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

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

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

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

BLOOM: What have you learned?

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

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

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

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

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

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

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

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

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

BLOOM: How did that work out?

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

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

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

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

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

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

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

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

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

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

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

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

BLOOM: How did this experience change you?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

By Louise Kinross

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

BLOOM: What led you into this field?

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

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

BLOOM: Why was it a good fit?

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

BLOOM: What's a typical day here like?

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

BLOOM: What do you love about your job?

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

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

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

BLOOM: What’s the greatest challenge?

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

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

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

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

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

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

BLOOM: What kind of emotions come with this job?

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

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

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

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

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

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

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

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

BLOOM: Is there anything you want parents to know?

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

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

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

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

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

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

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

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

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Disabled teens crave risk, speed, freedom: Study

By Louise Kinross

Many teens love to defy authority, speed and do other dangerous things.

A new Holland Bloorview study finds that youth with the most complex disabilities are no different.

The study—published in the Sociology of Health & Illness this month—found that youth with multiple disabilities want to experience freedom, speed, risk and time alone.

For example, one young man said the safety belt on his wheelchair didn’t fit with his spontaneous personality. “My whole life, I’ve been wearing this thing,” he told researchers. “I’m the kind of person that would take risks. I don’t want to just live my life as a boring person—seeing everyone do awesome stuff and me doing nothing.” His idea of fun was being pulled in the trailer of an ATV “because they were letting me go free.”

These activities are “not necessarily what we would prioritize in rehabilitation,” says lead scientist Barbara Gibson, who is a physiotherapist.

The study looked at how settings shape what we do—with the understanding that spaces aren’t static, empty containers, but fluid arrangements of people, furniture, technologies and social expectations that can enable or restrict what happens in them.

Participants included two groups rarely studied: those who require 24-7 medical care and may use ventilators and those who have little to no speech.

Youth were observed doing two activities they chose in the home or community. During the first activity they were taught to use a camera to photograph their experiences. In the second activity, a research assistant observed and discussed the activity with them as it was videotaped it. Participants also participated in face-to-face and electronic interviews. Nineteen young people aged 14 to 23 took part.

All participants said doing practical or fun things outside their home was much more challenging than inside—because people outside the family didn’t know how to help with medical or personal needs or weren’t willing to slow down to communicate with them. Activities at home were easier and more enjoyable because of connections with family members who got into a rhythm of facilitating them.

The wheelchair was seen as something freeing—for example, allowing a participant to go to the park alone—but also constricting, because of how the safety strap suggested the user was at risk or somehow lacking.

Because many activities for the youth relied on constant support from a parent, breaks from this connection—for example, when a personal support worker, friend or family member came by to visit or go out with the participant—was interpreted as freeing.

Rather than valuing independence over interdependence, the researchers suggest rehab clinicians look at how human connections in specific spaces enable positive activities and experiences. “…At times facilitating a dependency may be a more fruitful rehab goal than enabling independence,” they write.

For example, they note that while using a voice device will give a young person a higher rehab score in “independent communication,” many participants communicate much more efficiently and less laboriously through a parent or family member.

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Part 2 of Global News story on home nursing airs tonight

BLOOM contributor Marcy White was featured in a Global news story last night about her inability to get consistent, competent nurses to care for her son Jacob, who has complex medical problems, at night.

You may recognize the adorable Kian in the picture above. He and his mom Samadhi Mora Severino also participated in the story.

Marcy wrote an earlier piece for BLOOM on the topic: Home nursing is not respite for this mom.

Global plans to air a second piece tonight that includes reaction from Health Minister Eric Hoskins.

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Why home nursing is not respite for one mom

By Marcy White

It looks good on paper.

After a year in hospital with machines helping him breathe and tubes sucking out mucous that clogs his airway, my 13-year-old son Jacob, who has a rare neurodegenerative disorder and is prone to respiratory infections, was discharged last summer with 24-hour nursing care in our Toronto home.

But aside from the fact that nurses can cancel at a moment’s notice—leaving parents like me to pull all-nighters so my son doesn’t choke to death—we’re facing alarming incompetence when they do show up.

Jacob has had registered nurses care for him every night since he was discharged as a three-month old baby. In those days, our challenges were nurses who fell asleep, a nurse whose eyesight was so poor she had her driver’s license revoked, and the one who was arrested for shoplifting at Winner’s when she hid items behind my son’s back on a walk.

Talk to a family whose child relies on home nurses and most have a story or two about workers who fall asleep during night shifts (I’ve never heard of anyone being disciplined because of it). 

But in the last few months, the mistakes nurses have made while caring for my son at home have alarmed me beyond measure.

One fell asleep at 3 o’clock on a Saturday afternoon. When I woke her up, she apologized, saying: “I’m sorry, I took too much codeine.”

Another nurse placed food from her fingers in Jacob's mouth, despite the fact that Jacob has always been fed through a stomach tube because of life-threatening breathing problems. At the time, he also had a collapsed lung and required frequent suctioning and oxygen. “Everyone should be able to taste food,” she explained.

There’s been a nurse who couldn’t speak English, one who repeatedly poked him in the eye and accidentally wrote on his face with pen, and one who’d never suctioned a patient before.

Another nurse thought 140 mg of medication was equal to 1.4 ml of liquid. She didn’t realize that one measurement was for solids and one for liquids. She thought they were interchangeable.

A day ago Jacob fell out of bed onto a hard tile floor because the nurse had him too close to the edge and the railing was down. Aside from a lot of crying, I’m not sure how he didn’t break something. When I reported this to the director of the nurse’s agency, she responded: “Thanks for letting us know. We will log it in our risk file.”

The nurses I'm writing about still work with the agency that’s the largest provider of pediatric nurses in Toronto. Prior to welcoming them into my home and introducing them to my son, I was assured that they had the qualifications and experience necessary to safely care for Jacob.

We have met a handful of wonderful, caring and skilled nurses. But although we’re funded to receive round-the-clock nursing, we can’t get consistent, competent care. Everyone involved knows this, but excuses are constantly made.

Until something as serious as death can be attributed to the malpractice of a home nurse, I’m afraid the system will continue to ignore the danger faced by the most vulnerable patients like my son.

Because of Jacob’s medical fragility, he is always at risk of choking. His breathing problems are constant and we rely on the skills of proficient nurses to clear his airway and administer oxygen and other medications when he turns blue. There is little room for error or hesitation when his oxygen levels plummet to dangerously low levels.

It’s safe to say that I’m barely hanging on at this point. I actually parked my car on Avenue Road the other day and as I was going into the bagel store I realized that not only did I leave the keys in the car, I left the car in park, running! A few days ago I went to pick my daughter up at gymnastics at night and ended up at her school by mistake. I am exhausted. I even have dreams about being tired. Perhaps it will be me who is hospitalized next.

Despite families like ours receiving funding to cover round-the-clock nursing, there’s no respite when you’ve witnessed many serious errors in your child’s care and a nurse “no-show” (with no backup) is just a call away.

Marcy White is the author of The Boy Who Can: The Jacob Trossman Story. You can follow her on her blog at Cure PMD. Marcy is a family leader at Holland Bloorview.

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How to run parent-to-parent support

By Louise Kinross

Parenting a child with a complex, life-threatening medical condition and disabilities is stressful and isolating.

Some of the best support comes from other parents—whether it’s families sharing practical or emotional support on a hospital unit or a formal program that brings parents together.

Holland Bloorview’s Peer Support Best Practice Toolkit combines firsthand parent stories, peer-support models, case studies of Ontario programs, FAQs (and answers!) and a review of the research for parents and professionals wanting to start a group.

“Through case studies and talking to families we shed light on the very unique experience of families with very complex children,” says Julia Schippke, a knowledge broker on the Evidence To Care team at Holland Bloorview.

The toolkit was funded by the Ontario Ministry of Health and Long-Term Care. You can download it at the link. Section one of four gives a good overview of the project.

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Starting JK? It's a breeze, unless your kid has special needs

By Stephanie Ly

Our daughter Pepper will turn four this year, and though she's not your average four-year-old, she'll start kindergarten in the fall. 

When Pepper's older brother entered school two years ago I was nowhere near as nervous as I am now. But then Pepper is a special-needs child. And these last few months have been a traumatic roller-coaster for me.

The Ontario Ministry of Education lays out specific guidelines for inclusion, diversity and rights for all children to attend school regardless of ability, social or economic background. You may recall hundreds of parents converging to protest the Ministry’s “new” sex-ed curriculum which provides context for children of same-sex couples as well as introducing the concept of consent. 

My daughter will likely never be able to express consent or lack of consent. She may not be able to scream, run, or fend off an attacker. To these parents I say: How do you think this makes me feel, that you don’t think this piece of education is important? No, I certainly don’t trust that you are going to teach this to your children at home. I simply do not. But I digress.

Most parents take for granted that once they've registered their child for junior kindergarten and met the teacher, the only stumbling block is their own anxiety. When my son entered the school system, it was seamless. Effortless. 

Unfortunately, enrolling our daughter at the same school has been gruelling and heart-wrenching. There have been numerous meetings, appointments, doctors' notes and days off. Many hot tears later, we’re still unsure what September will bring for our little girl. 

For starters, we await the arrival of her wheelchair, which she'll need in order to start her school year. Her educational support worker hasn't yet been chosen, and most egregious, she was rejected from the before-and-after school program at her school because of her special needs. Wait, what? Inclusive? Not so, it seems. As a result, we find ourselves in a state of limbo for her September start. Tears of uncertainty flow regularly for me, and the anxiety is relentless.

So what of the Ministry’s inclusion mission? Does it include children like my daughter, who has physical and medical needs in addition to her cognitive delay?

All of the equipment required in the classroom (minus the wheelchair, which is our responsibility) has been set in place, we are told. We have become acquainted with her special education caseworker, kindergarten teacher, principal, school board special education coordinator, physical medical coordinator, Community Care Access coordinator and the like. 

Pepper's IEP is being worked on according to her abilities and the path we've carved for her with the support of her daycare educators. 

Yet it's August and we still don’t have a before-and-after school plan for her, something essential to our ability to work (which for me includes an hour's commute each way).

And the rescue medication recommended for our dear daughter when she has a seizure, and taken under the tongue, has been rejected by the board as a safety issue for the person administering it. A nasal spray, which we need to be trained on, will be used instead. 

What happens now? Advocacy, of course. My husband and I don our superhero capes and get our fight on. We fight for the right for our daughter to attend school with your child.

We hope and pray that she is safe, and included, and treated like an equal. We wait for the phone calls informing us of the seizures, of the accidents, of the loss of resources. We wait to see what impact a possible teacher’s strike might have on special-needs programming. And we get ready to fight.

See you in September.

Follow Stephanie on her blog at Pepperlepsy.

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How to keep climbing with a medically complex child

By Jade Biesinger

My name is Jade and I live in England at the other side of the “pond” with my husband and four lovely children. Heni, one of our daughters, has Trisomy 18.

Heni can’t walk, talk or do everyday tasks and is classified as having profound and multiple learning disorders. She wasn’t expected to live beyond birth but here we are—almost 20 years later—still heading in to uncharted territory.

I've often described our experience raising her as feeling like we are climbing up a mountain. We started out with lots of energy and supplies, only to find that they have been used up along the way—having covered many different terrains. As time has progressed the ascent seems to have steepened and we've got progressively more tired and feel in need of more rest stops.

During this time I feel I've given up lots of “me”—looking after Heni and subjugating my own needs to the bottom of the pile. I’ve encountered “ill” health, “un” sanity (I won’t say insanity because that’s something different) and at times have been bereft of creativity or balance in my life. Perhaps you could describe it as survival mode?

I was stuck. Stuck in the house, stuck in the role of carer, stuck in the mindset of “will life ever be any different?” I was living what sometimes seemed like a monochrome life—one I had never expected to be living for so long, but all the time keeping my head down and continuing to climb.

As I’ve journeyed on experiencing the valleys and peaks, I’ve not only been searching for ways to help my daughter and family and add colour to life’s struggles, I’ve also been looking to improve my own health and wellbeing.

When Heni was younger she used to have the energy to do full days at school but progressively over time I’ve seen her energy wane and her capacity reduce (strangely on par with my own?).

Nowadays she only has the energy to go to college for three-and-a-half hours in the mornings and then comes home to rest, sleeping for about one-and-a-half hours.

My time to accomplish anything has therefore dwindled from a whole day to a few hours.

Making time count is important to me, and I put my health as a high priority. Some of the things I do during that time frame are to go for a walk or run or do some form of exercise (according to how and what I feel I am capable of). I try not to overextend or overdo anything, but to be consistent in my actions. An important learning point for me was:

I can only give out so much before I become depleted. So I have to consistently fill myself before I can give to others.

I liken it to a watering can with a bunch of holes. It’s never going to be full up because it’s continually leaking out. You have to patch the holes up and replenish it before it can give water out of the spout and shower the flowers! I can’t always control every type of energy expenditure (like when my husband works away a lot or when Heni takes a dive for the worse) but I can control the other holes that leak energy.

For me, those include food intolerances, not eating right, sleep problems, negative thinking and too much or the wrong type of exercise.

It wasn’t until about eight years ago that I suddenly realized that I was “toast” and needed to have a break—on my own! My husband virtually forced me to go. I cried all the way to the airport and most of the journey to my destination, by which time I wondered how on earth I had got in to this state.

I had always been an independent person who would do anything and loved exploring and adventure. But I’d become a shadow of my former self. I needed some ME time. Which is the second thing I had to learn:

I’m always too hard on myself and feel guilty for everything and anything. Therefore it’s important to learn to quit the guilt.

How could I leave my daughter? I asked myself. How could my other children cope? What if anything happened to my daughter while I was away and the worst happened: she died? Would I ever forgive myself for leaving?

The week I had away was a wonderful pause in space and time. It made me realize that I needed to be strong, I needed to recharge so I could go back and have something to give back out again. I needed to stop the guilt and realize I wasn’t super human and could only cope with so much. I needed to look after myself too.

It sounds kind of selfish when you read it in the cold light of day—but what is the alternative?

There is a quote that says: “To lift someone else you have to be on higher ground.” How does losing your physical or mental health put you on higher ground?

I returned back from the holiday in a better space, but guess what?

It wasn’t long before that watering can was emptying again…and quicker! For a number of years I did a solo holiday or went away with a girlfriend. I always had fun, enjoyed the change in scenery and always came back feeling recharged and ready to go again. But, it’s surprising how soon you forget, so my lesson 3 was:

Remember the things you’ve already learned! Get up, dust off, try again.

I would forget to take a break and replenish my energies and land back in the same place as I’d previously been!

Even now I’m still resistant to the fact that I need help and I need rest from time to time. I still feel guilty and find it hard to just do nothing!

So what is the consequence of consistently neglecting yourself and not listening to your needs? Probably one of the most frequent occurrences resulting from “dis” ease today is that of chronic stress, which is the precursor to most illness out there.

Which leads me on to lesson four:

I’m in charge of my own health.

Now that doesn’t mean I don’t go to see any one to advise on health matters…on the contrary. I think it’s important to get the best advice possible and that often involves a number of different opinions.

For me that involved getting a series of lab tests done to show me what was happening in my body. I learned I was quite severely depleted in practically everything! All of a sudden I understood why I felt so rubbish! What I had failed to realize was that the constant stress I had been under was using up all my nutrients and leading me to a point where it was a struggle to do anything.

On to lesson five?

By small and simple habits are great things brought to pass!

Everyday consistency of small actions for me means taking supplements, small changes in eating or exercise habits and getting to bed a few minutes earlier. It takes time to get in to a hole and it takes time to get back out again. Often the temptation is to do something a few times and say “well that didn’t work” and move on to something else, without really giving it a chance. Sometimes it takes years for health to return fully. So, I am expectantly hopeful. Which leads me to lesson number six, my most recent:

Be patient, hold on to hope and enjoy the journey.

I read an article recently that described a demonstration. A person held two soda cans, one empty and one full. The empty can was squeezed and began to bend and then collapse under the pressure. The full can withstood far greater pressure and held firm. The demonstration was likened to us needing to be filled with spiritual strength (whatever that looks like for you as an individual). When spiritually fed and “full” we are able to withstand far greater outside pressures and forces. It doesn’t matter how many respite breaks I take or vitamin supplements I pop if I don’t have this type of strength. Without it I would have been crushed a long time ago.

There’s a scripture on a quilt that hangs above my bed, which reads: “I’ll wait on the Lord, be of good courage and he shall strengthen my heart.” I love reading those words and realizing that there is someone who understands the big picture, someone who I can “hope in and hope on,” someone who is teaching me, step by step, to be a better person and who is beside me (and you) every step of the way.

I gain strength in the knowledge that I’m not on this journey alone and that there’s someone higher and far greater than little old me who doesn’t have all the answers.

There are also people like you who are trekking up your own personal mountains, on similar journeys, but experiencing different valleys and peaks. We have to remember that as we climb we are doing so without a map. We don’t know where the peaks and valleys are and sometimes we can’t even see the top of the mountain. My wish is for us all to keep “on the way” and learn to love the terrain. And I hope that when we look back on the view we will see that our journeys were varied, rugged but stunningly beautiful.

Being a carer to my daughter has been one of the most difficult journeys I have ever had to take. It’s still a learning process and there are still peaks to tackle, but little by little I am learning to stop, enjoy the vistas and savour the time I have left with her. My plans for the future, and advice to you? Keep going!

You can follow Jade on her blog Henibean. She describes it as “learning how to live amidst challenges and maintain health, sanity, creativity and balance.” She uses her experiences as mum to Heni and her background as a physical therapist and naturopathic iridologist. “Please drop by and join me.”

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What message do we need to convey?

At the Certain Proof screening last week, many said we had to be more vocal in telling our children's stories, and in making those stories mean something to the average person.

I later wrote a piece that touched on the negative picture of parenting kids with disabilities that often emerges from research on parent and sibling health, from media stories about families who are desperate for services, and from general attitudes about disability.

I had a most interesting discussion with a friend who suggested that this negative picture may be feeding the stereotype among doctors and the public that life with disability isn't worth living.

With tremendous pressure to contain health costs, she said, we may see an unexpected effect: doctors and government officials making a case for not saving as many children in the NICU, not putting in as many traches, and not giving parents a choice about raising a child or withdrawing care.

At a presentation on care for children with complex medical needs at the National Symposium on Integrated Care last week, it was noted that the most medically complex kids make up less than one per cent of Canada's child population (67 per cent), but eat up 33 per cent of health-care costs.

Last year, at a Canadian conference on the ethics of care for children with disabilities, we heard that about 20 per cent of the pediatric population in the U.S. generates about 80 per cent of its health-care bill.

It's not hard to see why people fear that the drive to cut costs plus research and media stories that paint a gloomy picture for families may make kids with complex disabilities vulnerable.

My friend noted there will be growing pressure on women to terminate when a diagnosis is made prenatally -- to save money and "protect" the family. The bioethicist Margaret Somerville wrote last year about a plan to make Denmark "Down syndrome-free" by 2030 by promoting abortions.

The focus on hardships in research and the media also affects families raising kids with disabilities. When you hear you're at increased risk for depression, anxiety, and, in the case of autism, divorce, and you read some of the literature about siblings, it's hard not to question yourself. Am I falling apart? Are my other children being damaged? Can I handle this? It's kind of a set-up for failure.

But you can't show any vulnerability. You're constantly fighting the stereotypes, trying to prove that really your child is valuable and really you aren't a complete mess as a parent or partner.

Parents of kids with disabilities want research because we’re told that we need evidence to influence policies on supports and funding. The reason all of the academics are in children’s rehab is because they want to make things better for families.

But do we have specific examples locally or elsewhere where services were put in place as a direct result of study findings -- as a way to mitigate stresses?

I can't think of an example in the time I've been raising Ben. Maybe one will come to me.

My friend was suggesting that we need more studies showing the value that disabled children bring to their families and communities.

There are studies, like this recent one in Child, Care and Development called Parent views of the positive contributions of elementary and high school-aged children with autism spectrum disorders and Down syndrome (pages 817–828) by Holland Bloorview researcher Gillian King.

As King writes in the study:

The findings should guard against the inaccurate assumption that there are no positive benefits in raising a child with a chronic disability, or that families experience unrelenting challenges and stresses. Parents may find it useful to know that other parents report many benefits, and the findings may reduce their uncertainty and fear regarding the journey ahead. The information can assist new parents to realize that benefits and enrichments will accompany the hardships, thereby providing a sense of hope. On a societal level, the present findings may encourage community members to view children with disabilities in a balanced light, not simply as a burden.

But do studies like this get any play in the media? I don't think so. Typically the media is looking for conflict or drama or even just simplicity. They don't do complexity and ambiguity so well. And that's what life is like raising kids with disabilities. It's full of beauty and joy and pain and challenge.

So how do you think we should be telling our stories? How can we create a climate where the public supports better services for families of children with disabilities?

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An update on Kate!

You heard about Kate when her mother Julie Drury, above, wrote about a new complex care program at the Children's Hospital of Eastern Ontario (CHEO) that she was benefiting from. Here's an update on Kate from CHEO.

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One child, 10 conditions, no diagnosis

One child, 10 conditions, no diagnosis
By Julie Drury

Our daughter Kate (above) had 10 medical conditions but no diagnosis. Episodes of repeated vomiting, pain and racing heart rate sent us back to the emergency room -- over and over and over again.

Imagine arriving for the 10th time, your toddler presenting with the same unexplained symptoms. Armed with a binder that contains your medical journal, a list of countless specialists and ever-changing medication schedules, you tell your story to the triage nurse, then a resident, then a doctor. After hours of waiting, you move to an inpatient ward, where you repeat your child's complicated history again – to a student, a nurse, a resident, an attending physician and many specialists.

No one knows your child and no one knows what's wrong. You're afraid, frustrated and exhausted.

This was life for our family.

At nine months, Kate became acutely ill with episodes of cyclical vomiting, pain, lethargy, high heart rate, low oxygen saturation and severe anemia. Our family doctor seemed overwhelmed with her symptoms and began treating her for reflux. His advice was to take her to emergency at the Children's Hospital of Eastern Ontario (CHEO) in hopes that they would identify the underlying problem. We rushed there more than 20 times in the first 2.5 years of Kate’s life and had many hospital admissions.

In addition to serious medical problems, Kate was losing her hearing during this time and was eventually diagnosed with global developmental delay. To address this, we added rehab professionals to our long list of specialists: occupational, speech and physical therapists, auditory-verbal therapists, psychologists, a developmental pediatrician, integration support workers, school board advisors and community care access staff. On a daily basis, we juggled therapy, clinic visits, tests and chronic illness. Every six weeks or so, Kate became seriously ill and we'd rush to emergency.

Kate’s severe episodes often happened in the evening and escalated throughout the night. In the early days, my husband and I would take Kate to the hospital. We needed two sets of arms to cuddle and comfort her. We needed two sets of ears to listen to the doctors and understand how they were going to treat her. Over time we settled into a routine of me taking the lead and my husband taking the night shift during hospitalizations. Every hospital trip involved asking friends and neighbours to care for our older son.

With no diagnosis and no doctor overseeing Kate's case, I became Kate's medical advocate and coordinator. I tried to ensure that all of her specialists were up to date on the approaches pursued by each. I kept a detailed journal and concise medical summary because her enormous medical chart wasn't always available during clinic visits. And it was too long to be read and absorbed during an emergency room visit or hospitalization.

After two life-threatening events, I worked with a discharge planning coordinator to pull together case-conference meetings about Kate. We wanted better coordination of care, and a solid plan to support Kate and our family when we showed up in emergency.

I was taken aback when our simple request for a triage letter outlining Kate's conditions and protocol for care was met with reluctance. None of her specialists wanted to take the lead. Each felt uncomfortable being the point person for a child with a complexity of medical issues.

We couldn’t keep this up.

Then, during a long admission in February 2010, we heard about a new pilot program at CHEO. The Coordination of Complex Care Program (CCCP) aims to improve care for children who are medically complex and fragile. The team supporting a child includes a 'most-responsible physician,' a nurse and family-care coordinator, and a nurse practitioner. These professionals ensure that information is shared and coordinated among specialists, the community pediatrician and community organizations (integrated support services, community care, therapists, schools, social worker).

A single point of contact for hospital admissions meant that someone finally 'knew' Kate. For us, that someone was Dr. Natalie Major. Dr. Major knew Kate's medical history, had a protocol in place to treat her, and could adjust it as necessary. We weren't constantly repeating our story and trying to educate different doctors.

The CCCP has changed our lives and, most importantly, changed Kate's life. Shortly after being admitted to the program, a major health crisis due to poor medical coordination was averted. It’s been two years since we joined the program, and we’ve seen many benefits.

We make less emergency trips. We have a medical protocol in place to ensure Kate’s efficient and effective care. We have a triage letter that explains her condition and outlines how she’s to be treated. There is better communication and collaboration between her specialists. Because procedures are coordinated, Kate has fewer pokes for bloodwork. If she needs a general anesthetic, Dr. Major leads a full case conference to ensure all aspects of her complicated condition are considered.

Our family -- once incredibly alone and burdened -- now copes with solid medical support.

The reality is that children like Kate, who are medically fragile and complex, are living longer. While they make up 12 to 18 per cent of the population, their care produces up to 80 per cent of the health-care bill. They have chronic conditions and are usually dependent on technology. They spend a lot of time in emergency rooms and hospitals. Their health can be improved – and pressures on the health-care system reduced – by putting programs like CCCP in place.

I’m happy to say that Kate’s health has stabilized over the last 12 to 18 months. She continues to have her acute episodes (26 to date). But because of Dr. Major’s early intervention, the episodes are handled efficiently and quickly. This minimizes our trips to emergency and the need to hospitalize Kate. Since joining the program, Kate’s underlying diagnosis has been confirmed. She has a rare form of Mitochondrial disease.

Families who can’t access programs like CCCP are suffering. They shouldn’t have to experience fear, frustration, burn out and financial ruin. Their children shouldn’t be at risk for medical error or omission because they are so complex. They shouldn’t have to consider moving to another part of the country to get the services they need.

Innovative programs like CCCP demonstrate that there is a way to keep these children out of hospital. But in Canada, these programs are few and far between. Our program – a two-year pilot – now has one year of project funding. We will continue to fight for funding and recognition of its importance. Medically-complex children – who weren’t part of our community only a few short years ago – deserve this essential care.

Learn more about Kate Drury and her family at Caring Bridge.

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Welcome to the club

I'm delighted to share this guest blog from Marcy White (above right). Marcy recently joined our family leadership program at Holland Bloorview. This program sees parents advise on hospital policies and programs, mentor other families and share their health-care story and insights in education forums with staff and students. If you are a Holland Bloorview parent interested in this program, please let me know. Thank you Marcy!

Welcome to the club
By Marcy White

I belong to a receptive and supportive club which I joined unknowingly. At various times, our members are experts and novices, advisers and information seekers. My alleged area of expertise has nothing to do with my university education or employment history, and everything to do with raising my son, Jacob (above centre).

I am a reluctant expert on gastrostomy feeding tubes, also known as g-tubes, and all their accoutrements. G-tubes are surgically implanted holes in people's abdomens where tubes are inserted so that liquid nutrition and medication can be fed directly into the patients' stomachs, bypassing their mouths. I'm not proud of being so well informed about this particular topic but I amassed this information because I had no choice. My son, Jacob, has had a g-tube since shortly after his birth, almost nine years ago.

Recently, I found myself speaking with a scared and overwhelmed mom whose child was abruptly shoved into the world of 'alternative' feeding. During our conversation I remembered the feeling of relief I experienced the first time I was introduced to a member of what I have termed the Parents of Children with Medical Issues Club (PCMIC). And I recalled how comforted I felt to know I wasn’t alone. If I was able to provide some insight and information to this mom whose world was only recently turned upside down, I welcomed the opportunity.

When Jacob was born, he had difficulty breathing. At just a few minutes old, he was placed on a ventilator and started down a very long road of medical battles for his life.

When I went into the neonatal intensive care unit to feed him on his second morning, I was surprised to see my tiny son with yet another tube running out of his little body. This one was a two foot long naso-gastric (NG) tube coming out of his nose, taped in place to his soft cheek with a white bandage that covered almost the entire right side of his face. The nurse, noticing my appalled reaction, explained that this tube would function to deliver my pumped breast milk directly into his stomach because he couldn't swallow without choking. In shock from the unexpected complications following Jacob's birth, I watched as the milk slid into his body, drip by drip.

When Jacob was six weeks old and still in the hospital, the doctors approached us about having a hole surgically cut into his stomach so that a tube could directly administer his nutrition, a more permanent solution than the NG tube.

When I saw Jacob post-surgery I barely recognized my little guy. Since his second day of life, he had a giant white gauze-like bandage covering half his face. Walking over to his crib, I saw an adorable little baby with a full head of dark brown hair and pudgy cheeks. Two of them. Seeing all of him was the first positive thing about this surgery. I could kiss both sides of his face and feel his warm cheeks.

I learned how to care for my son. I received intense, on-the-job medical training from the nurses during Jake's three-month hospital stay. My education was from trained professionals. But I felt isolated – I didn't know anyone who had a child like mine, one who struggled each day to breathe, to move, to grow. I was alone.

Three years later, Jacob's medical issues had stabilized and taking care of his needs had long become routine. Through mutual friends, I was given a phone number of a parent with a child a few years older than Jacob who had similar medical challenges. With the hope of gaining some insight from a more experienced parent, I called Jeff.

One evening a few days later, Jeff and I were sitting in my kitchen discussing our common experiences and struggles as my husband, Andrew, mixed Jake's meals for the following 24 hours – six containers of infant formula, each one with a different ratio of powdered formula to sterile water. When Jeff noticed how time consuming and labor-intensive Jacob's meal-preparation was, he explained what his son ate and how much easier the process could be. Jeff shared pertinent information with us that nobody else had. The medical professionals didn't hold back these details on purpose, they just didn't know them.

I've learned that the best source of information is other parents who are in similar situations. My initial contact with Jeff didn't happen until Jacob was three years old and we had been struggling on our own for his entire life. I now know how helpful it is to seek out parents who have been through what I'm experiencing. The hardest part is finding the first person. After that, it gets easier. The PCMIC is a group that anyone with a child with challenges can join and benefit from the extensive and assorted experiences of others who are willing to share.

When I was given the opportunity to be the first experienced parent to speak to the mom new to my world, I welcomed the chance. I wanted to be able to do for her what Jeff did for me. I wanted to show her how supportive our club is.

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