When Wyatt Kane was born nearly seven years ago, his parents, Lori and Brian, had planned to have him delivered by midwives near their Maryland home. But Wyatt, as Lori likes to point out, foiled their plans. Twenty weeks into her pregnancy, doctors were so alarmed by anomalies they were seeing on her baby’s ultrasounds — including a possible congenital heart defect that would require immediate intervention — that they insisted he be born at a children’s hospital with a good on-site pediatric cardiologist.

“It turned out to be a misdiagnosis, but we chose Hopkins and he was born in the best NICU [neonatal intensive care unit] in the area, so it was the smartest mistake anyone ever made,” says Lori, because Wyatt’s medical challenges were legion. “People ask us what specialists are involved in Wyatt’s care, and a better question is which ones are not.”

Yet the most satisfying part about ending up at Johns Hopkins Children’s Center, she says, was being eventually introduced to the concept of palliative care. “I thought it was like hospice, something you did at the end of life,” Lori says. “But it’s really a team of doctors and other providers whose mission is to work with families facing complex medical issues, understand who we are beyond any medical diagnosis, and then help us navigate what has turned out to be a very complex and bumpy ride.”

At Johns Hopkins Children’s Center, the pediatric palliative care team is led by pediatrician Renee Boss. It consists of five faculty members, including the team’s medical director, Melanie Brown, and five staff members, including nurse practitioner Emily Johnson, chaplain Kat Kowalski and Cora Welsh, a child life specialist who has served as program manager of the “small but mighty” team for eight years.

“Our mission is to get to know patients and families, really understand their goals, and optimize quality of life in the midst of whatever medical and psychosocial challenges they are facing,” says Boss of her team, which serves 300–400 families a year. “That means really thinking about the child’s comfort and well-being, and supporting them in being able to enjoy life as much as possible, whether that is getting to play or engage with friends and siblings, or go home or back to school if they’re able. And it means supporting parents and siblings and other loved ones to help them cope with the child’s illness.”

Child life specialist Welsh says she was “smitten” with Wyatt and his parents as soon as she met them. “He was born with this amazing head of fluffy white hair that stood straight up, and he was just adorable,” she says. “And Brian and Lori are incredible parents — funny and smart and devoted to their kid. And at the time, they were new parents just trying to figure out how to help their sick baby.”

Looking at the Whole Patient

Wyatt spent his first 21 days in the NICU before he was stable enough to come home, and then spent most of the first year of his life being treated either in the emergency department or as an inpatient at the Children’s Center. “We were frequent flyers,” Lori says.

Wyatt has breathing issues, a heart valve problem and a form of epilepsy so severe he once had to be intubated for seven days to get his seizures to stop. He stopped eating entirely when he was about 8 months old, and he has since required a feeding tube, which had to be replaced eight times because, like any baby, he kept pulling it out. He has vision and hearing issues and needs round-the-clock care because he has to be turned at night and given medicine while he is sleeping. He needs to sleep with a BiPAP machine to help him breathe because he has sleep apnea, and Brian and Lori keep a close eye on his oxygen levels using a pulse oximeter.

“The main reason the ER visits have decreased is we have most of the equipment we need now at home,” Lori says.

Wyatt and his parents have seen endocrinologists, ophthalmologists, pulmonologists, gastroenterologists, and ear nose and throat specialists, and have even done genetic testing. “For my husband, the big frustration is that not one of these doctors has been able to come up with a diagnosis,” Lori says. “But I just say, ‘Wyatt is our mystery child.’ We lovingly refer to him as having the ‘Wyatt syndrome,’ because so far we haven’t found another kid like him.”

Lori, a veteran special education teacher who now supports and trains other teachers, and Brian, a police officer, were longing for help coordinating the sometimes conflicting advice they were getting from the specialists involved in Wyatt’s care. “We didn’t have anyone to quarterback our team,” she says.

Then one day she was talking to the mother of another child who was a patient at Johns Hopkins Children’s Center, and the mother asked if Lori had considered consulting the hospital’s pediatric palliative care team. “I said, ‘My kid’s not dying,’” Lori says. “And she said, ‘Neither is mine, but their job is to look at your child from a holistic perspective.’ And I kept saying, ‘My kid’s not dying,’ but I finally agreed to let somebody from Palliative Care swing by, and it was Cora Welsh — who is literally an angel and God’s gift to this earth.”

Welsh loves getting to know patients and their families, and Lori, who is feisty and exceptionally well-informed and uses humor to cope, has over the past few years become one of her favorite people in the world. “She’s someone I’d love to know even if I weren’t working with her,” Welsh says. “It’s ridiculous how much I love my job.”

For a while, Wyatt was having spells, usually just a few unnerving minutes a day, when he would stop breathing. Someone in pulmonology recommended a tracheostomy, in which a tube would be inserted in his windpipe that he’d have to wear round-the-clock to help him breathe. “Brian and I couldn’t wrap our heads around Wyatt having this invasive procedure when he was breathing fine most of the day,” Lori says. After exploring every option, consulting everyone on his team, including his pulmonologists, and balancing the risks against the impact on Wyatt’s quality of life — the trach would have severely impacted his mobility and he is a mover, loves to crawl and explore everything — they decided to decline the procedure. Lori says it helped enormously that the palliative care team understood and supported their choice.

“Specialists are expert in their disease process or organ system. Palliative medicine specialists are experts in symptom management, communication and helping families ensure that medical treatments align with their goals for their child,” says Brown. “So in our work in palliative care, we partner with the entire health care team to make sure that we are all considering the whole picture of what is best for the child.”

The Kanes have regular virtual outpatient visits with Brown, and Lori says her “go-to” person is Cora. “She has held my hand when I wasn’t sure my kid was going to live, and has celebrated with us when I’ve texted her the most ridiculous Halloween costumes or the dumbest things Wyatt has done,” says Lori. “So we know when things get hard we have a team of people who see Wyatt not just as all these crazy things on his medical chart, but as this kid. And they’re there, not just for Wyatt Kane, but for us as a family. It’s a gift I’m not sure I can find words to describe.”

She also loves team director Renee Boss, Rembrandt Foundation Professor of Pediatric Palliative Care, who is working to expand the program. Boss’ goal is to provide more support for children and their families outside the hospital, including in school, and to make palliative care available to every family whose child arrives at Johns Hopkins Children’s Center with a challenging medical diagnosis. She’s been running the team for two years, but has been involved in palliative care informally since she came to the Children’s Center nearly 20 years ago.

“We‘ve grown over the past two decades from being several interested and dedicated clinicians who didn’t have formal roles, but were doing this on the side, to a formal team of physicians, nurse practitioners, child life specialists, chaplains and, most recently, a nurse,” she says. “Still, insurance companies don’t pay much for time spent talking to and supporting families, so money is always a challenge and much of the team’s work is funded by the generosity of donors.”

A longtime critical care physician, Brown adds that pediatric palliative care doctors can actually save hospitals and insurance companies money because they are trained in advanced symptom management, “so we are often able to reduce the need for hospitalization by helping families manage symptoms at home.” All care should be palliative care, Brown says, because “it’s not just about prolonging life, but about making life as good as it can be.”

Chaplain Kat Kowalski, a former artist who has for years done palliative care in the neonatal intensive care unit, says that for some of the NICU babies, life is measured in days. “Some of our babies spend their entire lives within our walls, so it’s our mission to make those lives as joyful as possible,” she says. “It’s ‘Hey, your baby is here now. What can we do to make today wonderful for you and your family?’”

One family wanted a movie night, so Kowalski and other members of the team went to a movie theater and bought popcorn and chocolate and imported a big screen TV into a room so the family could watch their 2-year-old’s favorite film while holding their baby — not an easy feat in an ICU. Another family lamented that their baby would never see the ocean, so the team filled the room with ocean sounds and shells and dressed the baby in a tiny swimsuit.

“All parents want to know they are good parents, and it helps, going forward, to know that even in the most difficult circumstances, they achieved a special moment with their child,” Kowalski says.

Finding Joy 

Iris Jacobs with her mother, Debra (Photo courtesy Debra Jacobs)

In her role as child life specialist, Welsh works with children of all ages, and says she loves every child she meets because “kids are so much in the moment.” But she particularly enjoys teenagers, and she still thinks often of Iris Jacobs, a 14-year-old with a rare cancer who lived for months in the Children’s Center, struggling to recover from chemotherapy followed by an unsuccessful bone marrow transplant. Despite a grim prognosis, Iris was optimistic to the end, says her mother, Debra, who stayed with her, reading aloud, playing games, watching movies and laughing together throughout her ordeal. “My messenger of the gods,” Debra says of her irrepressible daughter (named for the goddess of rainbows), who died just a day shy of New Year’s Eve 2015.

Recalling Iris’ harrowing medical journey, Debra says the palliative care team “just made things better. Cora and [nurse practitioner] Emily were always stopping in, just like old friends, and they got a kick out of Iris because she was always busy, always doing something.”

And Welsh remembers Iris speculating, during one of their many conversations, about heaven, not sure she could make sense of it. “But she was obsessed with Harry Potter, and one day she said, ‘You know the part in the last Harry Potter book where he’s getting ready to meet Voldemort and he turns over the Resurrection Stone and sees his parents and Lupin and Sirius Black all turn up and they’re dead but they’re there with him? I think that’s it,’” Welsh recalls.

“‘My mom won’t be able to see me and I won’t be able to talk to my brother, but I’ll always be there with them.’”

Except for a few rare moments, Iris lived happily and optimistically in the present, Debra says. Welsh remembers a day when Iris “was in the PICU, very sick, intubated and couldn’t speak, but she still needed to be a teenager. Because she couldn’t text, I helped her text her friends — there was a boy in their group she thought was cute — who then helped convey her feelings, but also did not let him know how sick she was because it wasn’t the image she was wanting to put out there. The wonderful thing was that she got better, she stabilized, and he asked her to their school dance. And I still have a picture I will always treasure of the two of them getting ready to go into that dance together.”

Debra is still grateful that Welsh ran interference with Iris’ doctors to let her go home during the last months of her life to attend that dance, as well as a birthday party thrown by family friends.

“It’s such a great example of what we do,” Welsh says. “It’s sometimes difficult for other parts of our medical team to understand because the goal is usually to save lives. But our role is to see the whole child, and to understand how important it was to a young person like Iris, and to her family, to have that joy in her life even in the midst of her difficult cancer treatment.”