Considering It All, She’s Thriving
Shaniesha’s Palliative Care Story
Shaniesha dances through the house in her wheelchair whenever music is playing.
“She is the happiest little girl you will ever meet,” says her mother, Shaunon.
Although she is Shaunon’s little girl, Shaniesha is a 33-year-old adult living with severe Cerebral Palsy since birth, although not officially diagnosed until age 2.
Within the first 24 hours after her birth, Shaniesha was taken to the NICU with fluid on her brain. Doctors gave Shaunon the grim diagnosis that she may not walk out of the hospital with her baby. But, despite the odds, Shaniesha gained strength and was able to go home at four days old.
Shaniesha has had a feeding tube since she was 7 months old. She is nonverbal, but Shaunon says she can get her point across by her reactions. In her 33 years, she’s endured 17 surgeries.
“She is such a strong girl and very happy, and I often wonder how,” says Shaunon.
Good Days and Hard Days
The last ten years have been incredibly complex for their family. Shaunon is a full-time caregiver, mother to Shaniesha’s older sister, whom Shaniesha affectionately calls “Boo”, and a grandmother.
Shaniesha suffers from chronic infections, and her antibiotics have recently caused more seizures.
“We take the good days and try to have fun and spend time together, and get through the hard days,” she says. “Our typical day is to be grateful we don’t have a seizure or end up septic.”
Palliative Care is Not Hospice Care
Shaunon added Palliative Care to her daughter’s medical team in 2023 after Shaniesha was hospitalized with a seizure that lasted three weeks, causing her to be placed on life support. At the time, Shaunon was considering hospice care for her daughter.
“We had to make the hard choices of comfort care,” she says. “By the grace of God, that sweet girl snapped out of it. I knew I was getting to the point where I was needing more support. I have been doing this by myself for a long time.”
But, when Shaniesha recovered and did not need Hospice Care, Heartlinks offered Shaniesha the benefits of Palliative Care – expert support, symptom relief, and compassionate care for her and her family. They took the lead by getting paperwork from her providers, making the transition faster than if Shaunon had to do that step herself.
“It’s hard to ask for help,” says Shaunon. “Sometimes you get so stricken with grief and reality, it’s hard to do those things.”
Thriving, Considering It All
The long days have changed for the better for Shaniesha and her family since those three weeks in the hospital.
“Considering it all, she is thriving,” says Shaunon. She and “Boo”, Shaniesha’s other caregiver, have been able to manage the infections, reduce the number of out-of-home doctor appointments, and improve her quality of life.
“I can’t tell you the number of times we would have been hospitalized by now,” Shaunon says.
Palliative Care Bridges the Gap
Shaunon wishes that more doctors would offer Palliative Care more freely. She said she had to seek out Palliative Care on her own.
“I feel like we fall in between the cracks. She’s not pediatric. She’s not elderly. It might be more common than I know, but once they age out of the pediatric stage, there’s such a big gap there,” says Shaunon.
But Heartlinks was there to bridge that gap. Every two weeks, Shaniesha and Shaunon video call Charlotte Davis, one of Heartlinks’ Palliative Care Nurse Practitioners. Summer, Heartlinks’ palliative care coordinator, is also available to them on any weekday that they need her.
“From day one, I felt like a ton of bricks had been lifted off my shoulders because someone was listening to me,” Shaunon says through tears. “It’s difficult to be a medical mom because you don’t always get heard, and everything is such a fight.”
Shaunon recalls their first appointment with Charlotte.
“She just has this calming effect about her,” Shaunon says. “She absolutely cared to hear our story. She listened to me.”
Chronic pain took over Shaniesha’s body and Shaunon struggled to manage it. She had painful kidney stones that led to infections.
“People weren’t hearing me when I was saying she was crying for days and days,” says Shaunon. “So, to be heard on that aspect and to have the compassion for her to have quality of life was a big deal.”
Shaunon asked Charlotte if they could try a medication for bladder and stomach spasms – something she had for years been advocating for and had been previously denied. Shaunon says that Shaniesha has not required pain medication since this change.
Not Giving Up
“I don’t think there are words to express our gratitude for this program and the compassion that you have,” says Shaunon.
Shaunon was holding back tears as she thought about her daughter’s daily challenges living with her disease, its impacts, and the care she and her daughter receive from Heartlinks.
“It’s nice to talk to someone about her reality without giving up on her,” she says. “Sometimes saying those things out loud is really hard.”
“I don’t feel like people should have to be on the verge of a mental breakdown before they get help. That’s where I was at. I’m only human,” she says. “I really hope that my story can make an impact and help someone.”
Supporting Each Other – The Bigger Purpose
“Boo” and her kids visit Shaniesha often. She loves being an auntie, and they love to help push her wheelchair, put on her socks, and give her massages.
“It’s priceless to see them all bond,” Shaunon says. “When children are young, they don’t see you as different. They will grow up with great compassion for those who are not normal.”
Shaunon says there is a bigger purpose for this pain.
“God did not make me nonverbal, so her story is here to teach others,” she says. “I’ve tried to take other families under my wing and show them the ropes and give them guidance when I can – to help other people, too.”
For Parents and Caregivers
If you are the parent or caregiver to a child, young adult, or adult living with a serious illness, you do not need a provider’s referral to add palliative care to their medical support team. Simply call 509-837-1676 or complete our Palliative Care Referral Form today.
Browse our website to learn more about Adult Palliative Care and Pediatric Palliative Care, and contact us or call 509-837-1676 with any questions you have, Monday–Friday from 8 a.m. to 4:30 p.m.
At Heartlinks, we are deeply honored to walk alongside individuals and families through some of life’s most meaningful and challenging moments. Our palliative care program exists to provide expert support, symptom relief, and compassionate care at any stage of a serious illness.
