A Lifelong Journey

March 01, 2021 10:59 AM

A patient, a mother and their health care family.

two women hugging dog and patient smiling for camera
Kiara Williamson and her dog, Diego, visit friends at the Taubman Pharmacy pre-COVID-19.

“It’s true what they say,” says Anitra Williamson, “It takes a village to raise a child.”

For Williamson and her daughter, 27-year-old Kiara, Michigan Medicine is that village. In fact, Kiara and her mom, who have spent countless days in the hospital starting before Kiara was even a year old, think of many faculty and staff who have cared for them over the years as family.

From valet and guest services to pharmacy, facilities, environmental services, food and nutrition services, care management, spiritual care, blood draw, physical therapy, social work, nursing, surgery, primary care, and specialty and palliative care, the Williamsons’ village is vast and multifaceted.

And while Williamson and Kiara benefit greatly from the care they receive here, they bring with them challenges, rewards and lessons that benefit faculty, staff and learners, positively impacting the care they provide to others as well.

A lifetime of challenges

Kiara’s physical and developmental challenges began early, with digestive issues at birth, a cry that couldn’t be soothed, and a myriad of symptoms that would emerge throughout her childhood.

“When you meet her, you can’t tell she has all of this going on,” says Williamson. “I was in denial when she was a baby. She looked completely normal.”

Kiara has been diagnosed with more than 20 different conditions and disabilities including short bowel syndrome and gastric tube dependency, cerebral palsy, intractable partial epilepsy and cognitive impairment. These and other issues have landed Kiara at Michigan Medicine for what Williamson estimates to be more than 170 surgical procedures and countless inpatient stays.

An extraordinary patient

“Kiara was not expected to live past 13,” said Williamson, who remembers Kiara being referred to Make-a-Wish at the age of two.

Her survival is due, in no small part, to the life-saving care she has received at Michigan Medicine over the years, but it’s also something more.

“Kiara has tremendous resilience, and a love of life and interacting with people,” says Kenneth Pituch, M.D., who has worked with the Williamsons for years, first as a hospitalist and later as a palliative care specialist. “When she’s not sick, she’s got a great smile, and she remembers everything you’ve ever said to her.”

Pituch recalls a time when Kiara was just 10 and developed an infection in the line that had been surgically implanted into one of her veins to give her nutrition. The infection had spread from the IV line into her blood and left her close to death. The team made the very difficult decision to remove the problematic line and send her home. They didn’t know whether or not she would be able to tolerate not having the line, but her situation was so dire they decided it would be better for her to have a short life than to suffer with ongoing infections.

“She went home and had the longest stretch outside the hospital that she’d had in years,” Pituch says.

Kiara has experienced many touch-and-go moments over the years, but always bounces back; her will to live is stronger than any challenges thrown her way.

“She is strong and perseveres,” says Barbara Felt, M.D., a developmental behavioral pediatrician who began working with Kiara to address self-injurious behavior when she was in her pre-teen years.

“She will say things that suggest she understands life and living on a whole different level,” says Felt. “It’s always a mistake to think someone with cognitive impairment or other disabilities doesn’t understand. She has knowledge on some other plane, and we can learn from that.”

A loving mother, advocate and teacher

“Kiara was my first and only child,” says Williamson. “When she was a baby, a lot of stuff was going wrong with her and nobody could seem to figure it out. She had a cry I couldn’t handle and everyone tried to tell me it was because I was a first-time mom. I knew it was more than that, and I kept ending up at the ER.

“U of M had a small library at C.S. Mott Children’s Hospital back then so I went and did my own research,” she says.

That was when Williamson came across a condition called Cri-du-Chat syndrome, or cry of the cat. After reading about it, she knew right away Kiara had the condition.

“I asked them to test her for it, but they told me she probably didn’t have it because she’s black, and it’s an expensive test that insurance may not cover. I told them to pretend like she wasn’t black and test her anyway.”

The test came back positive, and that was the beginning of Williamson educating faculty and staff about the need to talk — and really listen — to parents.

care team in navy scrubs hugging patient in wheelchair smiling

Pre-COVID, Kiara surrounded by her blood draw team during one of her visits.

patient in pink sitting with one of her doctors smiling

Pre-COVID, Kiara with the late Daniel Teitelbaum, M.D., who was on her care team for more than 20 years. 

doctor hugging patent in chair

Pre-COVID, Kiara and her pediatric physician, Thuy LeDesai, M.D.

daughter with blue bow and mother smiling at camera

Kiara and her mother, Anitra Williamson, who have spent 27 years receiving care at Michigan Medicine, after initially being told Kiara may not live past 13 years-old.

father and doctor with daughter on graduation day in white ceremony gown

Pre-COVID, Kiara's father, Barbara Felt, M.D., and Kiara after her school graduation.

nurse standing with smiling girl

An older photo of Kiara with her nurse, Denise Spicer.

mother holding infant in arms

Kiara and Anitra, her mother, when she was an infant.

a young child in hospital gown on hospital bed smiling

A young Kiara at C.S. Mott Children's Hospital.

Young girl and dog in front of Michigan Medicine wall

Pre-COVID, Kiara at Michigan Medicine with her dog, Diego.

“We must listen to the mothers of these complicated, seriously afflicted children,” says Pituch. “We tell our residents this all the time.”

“Over the years, Anitra has taught our medical students, residents and fellows across many disciplines about how important it is to work with the parent,” says Felt. “A parent’s knowledge is often as important as our medical knowledge.”

Williamson’s intuition, self-education and advocacy for her daughter have had such a profound impact that Williamson was asked to participate in the U-M Leadership Education in Neurodevelopmental Disabilities program.

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“Part of the program to receive certification is an interview with Anitra,” says Felt. “People walk away from talking to her with a different perspective. I see her as a really valuable teacher for our institution, our learners and for us as faculty.

“She knows that while we care for Kiara, we also learn from the experience. Instead of getting angry with the care team if something’s not going right, she works to educate them.”

“She is a great advocate,” Pituch agrees. “She has proven to us that if we listen to her, she will listen to us and always try to do the best thing for Kiara.”

Meaningful relationships

Relationships built on caring and trust have helped Kiara and her mother thrive.

Shortly after she was born, Kiara began suffering life-threatening digestive problems that led to a consultation with a pediatric surgeon named Daniel Teitelbaum, M.D., who quickly became a hero to the Williamson family.

“His surgeries saved her life many times,” Williamson explains.

Teitelbaum, who passed away in 2016, specialized in parenteral nutrition and short bowel syndrome, and would become much more than a surgeon to the Williamsons during the two decades of care he provided for Kiara.

“When Dr. Teitelbaum died, it was like losing my own father,” says Williamson. “He was always so in tune with what was going on with Kiara.”

Over the years, the Williamsons formed special bonds with a number of faculty and staff members, including Denise Spicer, R.N., a nurse who cared for Kiara during visits to Michigan Medicine’s C.S. Mott Children’s Hospital from the time she was six months old until Kiara moved to the adult hospital two years ago.

"A parent’s knowledge is often as important as our medical knowledge."
Barbara True Felt, M.D.

“We were together for so many years,” says Spicer. “I watched her go through all of her milestones and difficulties as a child having multiple surgeries. I knew all of her idiosyncrasies and her big personality.

“She likes to take on personas of famous people and really knows how to strut her stuff,” says Spicer, “She remembers facts about all these celebrities. At one point in time, she would not respond to her own name or let you treat her until you called her Jade.

“I believe she might even be engaged to Nick Jonas,” Spicer laughs.

Williamson feels a close connection to Spicer and is deeply grateful for the care she has provided.

“She is the type of nurse that, if something happened to me, I would have left Kiara in her care,” says Williamson. “She was like a surrogate mom.”

A welcoming environment

The Williamsons’ Michigan Medicine experience extends beyond the exceptional care Kiara has received from physicians and nurses. Valet employees who help get Kiara safely out of the car during seizures, pharmacists who know her medicine list by heart and guest services employees who go out of their way to welcome Kiara and her mother are all part of what makes the hospital feel like home.

“Our main entrance welcome center served as a beauty parlor for many years,” says Erin Karr, guest services specialist who has known Kiara since she was three years old. “Anitra and Kiara would bring all of Kiara’s dolls and drop them off with me at the beginning of their doctor’s appointments. I would get their hair all brushed and styled and ready for them to pick up when their appointment was over.”

Karr said she and co-workers Patricia Marshall and Charnita Willis always kept a bottle of pink nail polish at their desk so they could paint Kiara’s nails when she came for visits.

“We just love all three of them,” says Karr of Kiara, Williamson and Kiara’s service dog, Diego.

Karr even invited them to attend her wedding in 2018.

“They were our favorite guests and quite a hit with everyone there,” she says. “Wherever they go, people fall in love with their spirit.”

Transitioning to a new hospital home

Two years ago, Kiara’s care team determined it was time for her to transition from Mott to the main hospital.

“We always worry about our kids when they become 21, 22, 23…no longer appropriate for the children’s hospital,” says Pituch.

He and others from the pediatric palliative care team, social work and the adult hospital unit all worked together to create a plan for Kiara’s transition. Sensory issues and a severe seafood allergy on top of Kiara’s other complex ailments make it especially critical for everyone involved in her care to know her case well.

“We decided to put together a core group of nurses who would really understand her care,” says Mary Lake, the clinical nursing supervisor for the floor. “We asked for nurses to volunteer to serve on this core team and we talked to all of them about Kiara, the nature of her visits and all of the special supplies she needs.”

The team used information from the ‘all about me’ section in Kiara’s patient record to focus on details that would help ease the transition for her. Now, before her stays on the unit, they print out pictures they know she will like (including pictures of Nick Jonas) and put them around her room. Lake said the nurses even style their hair like Kiara’s and wear earrings they know she likes.

“Our team really gets excited when Kiara is coming,” says Lake. “They immediately start preparing and it’s so inspiring. The way they own it is beautiful.”

According to Lake, the opportunity to care for Kiara is especially meaningful for the team.

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“Nurses have thanked me for assigning them to Kiara,” Lake says. “They’ve come to me afterwards and told me what a joy it was – that they didn’t know how much they needed that connection with a patient — and they take that forward to other patients.”

Lake says one nurse, who had been feeling burned out, came to her after caring for Kiara with a renewed sense of purpose, having made a decision about the future of her career inspired by her experience with the Williamsons.

Celebrating life

“Kiara is still going strong,” says Williamson. “She will be 28 this year. It’s been a long road but worth every minute, and I’m so thankful for her life.”

Kiara’s journey at Michigan Medicine has touched many other lives as well.

“We’ve been invited to her graduation party, twenty-first birthday and other milestones,” says Pituch. “It’s always fun to celebrate these things for her because we’re never sure this isn’t going to be the last time she’ll have a celebration.”

“Seeing nurses and physicians at her celebrations reflects the caring our whole system has had for her,” says Felt. “She responds well to that care and has a level of trust for our teams that enables her to undergo uncomfortable procedures. It’s all about trust.”

The special bond shared by Kiara, her mother, and members of their Michigan Medicine village, suggests it might also be about authentic connections and gratitude for the gift of knowing each other.

“We’ve spent Christmas and Thanksgiving here, and a lot of Halloweens,” says Williamson. “The people here have been our family and it has been an amazing journey. I’m so glad to be able to share our lives with Michigan Medicine.”