The Big Sick

By Morgan Strehlow

"The found a lump."

Twas thirty-one when my father called me to give me a heads-up about my mother’s mammogram results. “Honey” and “Papa” had just left her doctor’s office in East Texas, and they were on the road to Waco to spend the weekend with my then three-year-old son. Only one of those events that Friday morning had been planned. “We can’t leave town,” I called my husband as a thousand questions raced through my head. I had planned a much-needed getaway for his birthday. But that weekend, we didn’t get away. I couldn’t get away. Nothing quite prepares a child to hear devastating news about a parent – not even age.

A serious diagnosis of a beloved family member can disrupt and dysregulate an entire family as they navigate their new reality and the accompanying uncertainties. This is especially true when children are impacted.

We wait for phone calls. We wait for appointments. We wait for test results. We wait for surgeries to finish. We wait for treatment. We wait for hair to fall out. We wait for answers that may or may not ever come. And when they do, they don’t come fast enough.

When I first learned about my mother’s triple-negative breast cancer diagnosis, my mind immediately went to the worst-case scenario. Before I had even processed the news, I was already worried about how to communicate the potential outcome of her sickness to our toddler, who is very close with his “Honey.”

Fortunately for our family, my mom’s treatment has led to a best-case scenario for her particular diagnosis. But so many other families are walking a much different path.
Jennifer Willie, CCLS is a Palliative Care Child Life Specialist at Baylor Scott & White Hillcrest, and it’s her job to help patients’ families find answers to questions like these during the worst moments of their lives and ensure that the psychosocial needs of the youngest family members are supported.

“Child life specialists are trained professionals with extensive child development knowledge and expertise in helping children and their families overcome life’s most challenging events. Most child life specialists work in the pediatric hospital settings – that’s the traditional role and where I started out my career,” Willie said. “It’s typical for pediatric hospitals to have child life specialists who support seriously ill children. However, few adult hospitals are prepared to serve the emotional needs of children loved by a seriously ill or injured adult.”

Fortunately for Waco, Baylor Scott & White Hillcrest is one of those. As a member of their Supportive and Palliative Care team, Willie not only works directly with children, but she works closely with their parents and caregivers, giving them the tools they need to emotionally support the children they love.

A new and emerging field in healthcare

Distinct from hospice care, palliative care is a field of medicine offering a wide array of services that focus on the quality-of-life issues for patients suffering from serious illnesses, often at the end of their lives, though treatment may still be ongoing. The end-of-life support program also extends to family members and includes the services of child life specialists. While the medical staff cares for the patient, child life specialists care for the little ones that love them.

This new specialty in the child life profession has been championed by Dr. Robert Fine, the head of the palliative care program for the entire Baylor Scott & White system. About a decade ago, he recognized a significant need for the psychosocial support of children as he was talking with and treating more and more younger families in palliative care.

“Dr. Fine acknowledged, in the midst of all his wisdom and knowledge, that in medical school and in clinical training, he was not properly equipped to be able to talk to families about how their kids would be impacted by a person’s serious illness,” said Willie. “So, he set out to fill that gap and started advocating for child life specialists to come over from other units periodically to meet with his patients and their families.”

At the time, Baylor Scott & White was the only hospital in Texas to offer this critical service for children and families. Today, palliative care has its own team of child life specialists across the entire Baylor Scott & White system as they break ground and expand this emerging field that has proven to impact the well-being of thousands of families.
Willie says that most people are surprised to learn about this unique child life program. She has even come across colleagues who work in other units among the Baylor Scott & White system who were unaware of what she does until they received a serious diagnosis and were referred to her.

Empowering families to best support their youngest members

Having a seriously or terminally ill family member often takes a physical, emotional and financial toll on an entire family. When a family is referred to Willie, she will first meet with them to learn more about the family dynamics, the children involved and hear the questions and concerns the parents or caregivers have as they navigate the path ahead as a family.

“The adults are the experts of their own kids,” Willie said. “So my goal is to come alongside them with my unique expertise so that they can be better equipped and empowered to support their children, too.”

From there, Willie can be a consistent and trusted companion for the grieving children and offer developmentally appropriate support through therapeutic activities and interventions based in play. These activities are designed to encourage children to talk openly about their questions and concerns, identify and express their feelings, process their experiences and feel more connected to their families. During these activities, children often share concerns that they had not previously shared with anyone, and the child life specialists can better know how to help the child understand and cope.

“In my role, I make sure that the parents or caregivers are always aware of the concerns and worries the child shares with me during our time together, even if they may not express them outside of our visit,” said Willie.

The scope of support offered by palliative child life specialists is with infants through the age 18, with services and language uniquely tailored to each child based on their age and developmental level.

“You would be surprised to know that even infants are impacted by the serious illness of a loved one – even if it’s not a primary caregiver,” Willie said. “Babies love a routine, even if they aren’t aware of it. When something in their day-to-day life shifts, their little antennas go up, and they start to focus on these inconsistencies from what they perceive to be the norm.”

Baylor Scott & White uses an interdisciplinary approach to supporting grieving families and children. In addition to the medical providers caring for each patient, the palliative care team includes a dedicated social worker and a chaplain.

“When the needs of the child go beyond my scope of expertise, I will refer them to our chaplain, Scott Houser, or Abby O’Reilly, our licensed clinical social worker. And, when necessary, I’ll make external referrals to a licensed counselor or a play therapist who can help them in a more specialized way,” Willie said. “I will continue to support the family as needed. The needs of each family vary greatly, so we really embrace the interdisciplinary team approach to caring for our families.”

Common questions and concerns of children

While the circumstances of each family are unique, Willie and her colleagues have found that there are common questions and concerns that are not. Knowing these three big concerns can help those struggling to talk with their children about “the big sick” to better understand how they can successfully navigate these difficult but necessary conversations.

Can I catch this?

The biggest concern that kids have whenever someone in their life has a serious illness is whether the sickness is contagious.

“This has always been the biggest worry we hear from kids, but it is especially common since the beginning of the pandemic,” Willie said. “A lot of children will now associate hospitals with Covid or being sick with something that’s contagious. They may be wondering if they can give their mom a hug or if they can drink out of dad’s cup and not get sick.”

For a diagnosis that is known not to be contagious, Willie recommends addressing this issue with kids up front to provide clarity so they know their loved one’s sickness is not something they can catch by being near them.

Did I do something to cause this?

Another common concern Willie hears from kids she works with is whether or not they did something to cause their loved one’s illness. Because kids are developmentally egocentric, meaning their perception is that the whole world revolves around them, they often think it’s their actions or behaviors that are the cause of whatever has happened in their life.

“I met with the child of a heart attack patient once who thought she caused the heart attack because she used her dad’s toothbrush the night before, and she was worried she may have given him some bad germs,” said Willie. “We want to make sure that kids know it is not their fault and that nothing that they did caused this to happen.”

Younger kids must be consistently reminded of this throughout treatments because if there is not a clear reason or because that makes sense to them, like cancer, kids will sometimes take that blame on themselves.

“The more they hear from somebody they trust that it’s not their fault, the less they will worry about this.”

Who will take care of me if he/she dies?

The third common worry that parents are encouraged to address with their children is the question of who will fill the roles or do the things the person who is sick normally does when they are in this hospital or if they pass away. It’s important for parents and caregivers to reiterate to kids what they can expect as norms and plans shift and evolve in their day-to-day lives.

“Kids will express questions like ‘who is going to do the mom things when Mom is in the hospital?’ or ‘who will pick me up from school every day if Grandma dies?’” said Willie. “These concerns are rooted in a child’s need to know who’s going to take care of them now that things are different.”

Even infants and toddlers who are not yet verbal will likely notice and wonder the same questions. Addressing these three big common concerns is foundational for the education Willie provides to families she works with.

Equipping support systems to come alongside families

Because there are more than just parents and caregivers in a child’s life, extended family members, teachers, neighbors and other members of the community should be brought in as part of a child’s greater support system.

“Whenever we first talk with parents during the consultation, we want to know what other adults are around their kids during the day,” Willie said. “These other adults in a child’s life will need to be looped in and informed about what’s going on so they can be mindful of the impact it’s having on the child.”

Oftentimes, when a child senses anxiety in their parents or caregivers, they won’t bring their worries or concerns directly to them but rather to a teacher at school or the parent of a friend. Communicating with these other adults in a child’s life is something parents are highly encouraged to do as early as possible so that they can care for and protect their kids emotionally, even when their kids don’t come to them directly.

“Your support system doesn’t need all the details of a diagnosis and prognosis, but they do need to be equipped with some scripts and best practices for walking alongside the grieving child,” said Willie. “It can be as simple as ‘This is how we are communicating about this within our family.

These are the words we’re using. If you could help us reiterate that if they were to bring up any questions or ask you anything. Please use these words to be consistent.’”

Other adults in a child’s life are encouraged to respect the requests and messaging of the parents when navigating these delicate conversations. The younger the child, the more they will need repetition and consistency as they try to make sense of the world around them. If they don’t like the answer that one person is giving them, they will often go to other adults and ask the same questions. The more that they can have a clear and consistent message about what’s going on, the more they will start to understand what that is.

Beyond that, it’s important to give grieving kids a lot of grace during this difficult time in their lives.

“Kids don’t always cope through their emotions, but rather they cope through their behaviors,” Willie said. “The added stress in their lives can make them more irritable or less engaged. This is why it’s so helpful for teachers to have a little bit of extra understanding of what’s going on.”

The impact of palliative child life services

The need for child life services in palliative care units at hospitals has grown significantly in recent years, especially in light of the Coronavirus pandemic’s impact on families and hospital policies.

“I was in this role before the pandemic and through the pandemic, and it’s been really interesting to see the trajectory of how the needs of children have grown and evolved over the last couple of years,” Willie said. “In the earlier days of the pandemic, the visitation restrictions kept children from being able to be inside the hospital and at the bedside of their sick parent, which is something that we typically advocate for.”

Being present with a sick parent is a significant way kids can cope better with loss and death.

But during the pandemic, they weren’t even given a choice to see their loved one – even during the end-of-life days.

“I found my role to be a critical support to these devastated families as I would walk alongside kids who were feeling abandoned and left out of where they wanted to be and would normally be when a parent is dying,” Willie said.

One thing that happens in the child life program is assisting kids with memory-making projects and activities to help them feel more connected to their families while they grieve. These therapeutic activities are more than art projects but are designed to help children cope with the many losses they are experiencing.

Growing awareness and garnering community support

While the impact of the pandemic has ebbed and flowed, the demand for child life services has continued to grow steadily. Each year, more than two million children under the age of 18 in the United States experience the death of a parent, and every year for the last few years, Baylor Scott & White has seen a significant increase in the number of child life visits facilitated across their system. What hasn’t grown quite as much, however, is the amount of funding that supports the important work Willie and her colleagues do every day.

“I’m the only palliative child life specialist here in Waco at Hillcrest,” Willie said. “Because the support services we offer are non-billable services, our program and my position are philanthropically funded by the Baylor Scott & White foundations. Without the generosity of donors in the community, there is no sustainability for what I do here.”

Fortunately for thousands of families, Baylor Scott & White has many generous donors.

But in order to create additional positions like Willie’s, more support from the community is needed to make sure this service is accessible to more and more families and children.

According to the Baylor Scott & White All Saints Foundation, research demonstrates that a parent’s serious illness or death can dramatically impact children, increasing their risk for mental illness, substance abuse, criminal activity and dropping out of school. Interventions with a child life specialist can help mitigate these risks and provide a safe place for children to ask questions and express their emotions.

“The care we provide to children and families is also a service to the greater community, and we are hopeful that bringing more awareness about what we do can help garner community support for our program,” Willie said. “There is a proven need for another child life specialist on our Hillcrest campus, but we don’t have funding in place yet. I’m just a one-woman show here, and while I’m consistently keeping incredibly busy in my role, it’s still a real gift and privilege to be able to come alongside and care for Waco families.”