LAKE HAMILTON — Amanda Hall came home in an ambulance.
Her parents were waiting at their single-story house in this town, about a 15-minute drive east of Winter Haven. Cindy and Walt Hall had made the 80-mile round trip to the Orlando hospital every day while their daughter fought for her life.
Amanda, 42, was born with Down syndrome, which left her at high-risk of severe illness if she contracted COVID-19.
She tested positive on Dec. 3. Two days later, she was on a ventilator in intensive care.
She wasn’t discharged until mid-February. The Halls were relieved but still anxious. So much time spent in a hospital bed had atrophied her muscles, and she could no longer walk or feed herself. Doctors said she needed extensive physiotherapy.
In the days that followed, Amanda was lethargic and weak. Her oxygen levels dropped, and her parents had to rush her back to hospital again, this time for 10 days.
Home rehab therapy was set up for Amanda after her discharge, but it was just twice a week. The Halls said they reached out to about 10 hospitals and nursing homes in Polk County with physical therapy programs, but none would accept their daughter.
Some wouldn’t take Amanda’s health insurance. Others said she wouldn’t fit into their programs because she was non-verbal.
One place told her parents — without even examining Amanda — that their daughter was “unskillable.”
“Most people when they came into the room, they just assumed she’d never walked before,” Cindy said.
After several days of calling rehab centers, they were frantic. It was hard not to dwell on the home therapist’s warning: without intensive daily therapy, Amanda would likely never walk again.
• • •
From the moment Amanda entered their world, her parents fought to protect her.
She was their third and youngest child, born in 1978 when the family lived in Panama City. Expectant moms then were not routinely screened to see if they were carrying a child with Down syndrome. It was only after Amanda was born that Cindy and Walt learned of her condition.
The genetic disorder causes lifelong intellectual disability and developmental delays. Other medical issues, such as heart and gastrointestinal disorders, also are common.
One doctor told them to put Amanda in an institution and get on with their lives. Instead, they took the advice of a pediatrician who told them to take their daughter home, love her and everything will be fine.
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Amanda was just 1 when she needed surgery for a bowel obstruction. The surgeon advised afterward that she be fed only by intravenous fluids while her intestines healed, Walt said. She lost weight and her health wavered for weeks.
A nurse whispered in Cindy’s ear that she needed to call in a pediatrician. That doctor overruled the surgeon, put her on nutritional supplements and then solid foods. Three days later, Amanda was well enough to go home.
“We learned quickly that we had to be on alert for our child,” Walt said.
Cindy and Walt both grew up in rural east Polk County and attended Haines City High School. They both came from one stoplight towns, he likes to say. She was born and raised in Lake Hamilton. He grew up about a mile south in Dundee.
The family moved back to Lake Hamilton in 1988. Walt worked as the director of the local Boys & Girls Club. Cindy stayed home to raise their kids and care for Amanda.
Amanda learned to walk by age 2. She attended public schools, graduated at 22, then spent 10 years working at the Polk Training Center for Citizens with Developmental Disabilities in Lake Alfred.
She loved swimming in the family pool and bowling. She rode a tricycle, competed in the Special Olympics and regularly feasted on chicken nuggets.
As she got older, music became a passion. She stayed awake at night in the TV room listening to Prince, Michael Jackson and Lionel Richie.
Walt is now 73 and Cindy is 70. They know caring for Amanda is a lifelong commitment, one they’re glad to have.
“She’s changed every one of our lives,” her father said. “She’s made me a better man, made her brother and sister better people. If nothing else, she’s taught us patience.”
Amanda was on the vaccine waiting list when she tested positive for COVID-19 in December. Her parents caught it, too, but all their thoughts were for their daughter. They knew her medical history — including a bout of pneumonia — made her extremely susceptible to the virus’ worst symptoms.
A 2020 United Kingdom study published in the Annals of Internal Medicine found that people with Down syndrome are four times more likely to be hospitalized and 10 times more likely to die from COVID than the general population.
Children with Down syndrome have a predisposition to pneumonias and acute respiratory distress syndrome, the study states. An article published by the Yale School of Medicine notes that people with Down syndrome often have larger than normal tongues, tonsils and adenoids and lax throat muscle tone, making them more susceptible to respiratory infections.
Amanda was admitted to Winter Haven Hospital on Dec. 3, a few days before her 42nd birthday. COVID restrictions meant her parents couldn’t see her during the first three weeks she spent in intensive care.
“When they took her for the first time,” Cindy said, “I thought I may never see her again.”
The parents lived off progress reports from a granddaughter who worked at the hospital. Eventually, doctors let Cindy visit during the day while Walt waited outside in his Jeep Gladiator.
The hardest part, the mother said, was leaving every night.
Even after treatments of monoclonal antibodies and convalescent plasma, Amanda struggled.
Two days before Christmas, doctors performed a tracheotomy, a procedure where a tube is inserted through the neck into the windpipe. They also put a feeding tube in her stomach, and she was transferred to Select Specialty Hospital in Orlando, where they hoped specialists could get her off a ventilator.
Walt was again the unlucky parent excluded from visiting by COVID restrictions. This time, at least, he could see his daughter through a ground-floor window.
He watched as doctors experimented by decreasing the oxygen in Amanda’s ventilator to see how well she could breathe by herself. Over a six-week period, they slowly increased the load on her lungs until she could breathe, at first just through the tube in her windpipe, then on her own.
Amanda was discharged Feb. 15. She could sit up a little in bed and eat soft foods. But that was all she could do.
• • •
Physical therapists have a rule of thumb for rehab. For every day a patient spends in a hospital bed, they may need five days of rehab.
Amanda arrived at the Transitional Care Unit at AdventHealth North Pinellas in early March. By then, her three hospital stays added up to almost three months.
Walt and Cindy gave up finding a rehab center in Polk County and reached out to hospitals further afield. They heard that AdventHealth had a rehab facility in Orlando but were instead sent to its Tarpon Springs hospital.
It took 180 miles and four hours to go from Lake Hamilton to the hospital and back. It was too much to drive every day, so Cindy and Walt lived in a nearby hotel. They got help and prayers from the Church on the Hill, the Southern Baptist church in Dundee where they worship.
Amanda started a regime, spending up to three hours a day working with physical, occupational and speech therapists.
She lifted weights and kicked balls. Initially, she was so weak, it took two therapists to lift her onto her feet. She couldn’t handle long sessions, so therapists broke them into 20-minute blocks, said Tory Flood, executive director of the Transitional Care Unit.
As well as working on her legs, therapists needed to strengthen her core, which plays a key role in standing and walking.
Progress came slowly. Therapists stood on either side of her as she learned to support her weight while leaning on parallel bars. They did tests to help her return to eating solid foods. The wanted her to be able to enjoy her beloved chicken nuggets.
• • •
The transitional unit takes a non-traditional approach to rehab. Some of its 32 beds have no rails. Patients are encouraged to wear their own clothes and sneakers instead of hospital gowns, so they feel more at home.
There is 24/7 access to social workers, and the location inside a hospital means therapists have access to more equipment and labs. The unit this year received a 5-star overall quality rating from the Centers for Medicare and Medicaid Services.
A turning point in Amanda’s two-month rehabilitation came the day she was strong enough to walk in the hallway — by herself, with a walker. The hallway is like the center’s main street, Flood said. Amanda was now part of the community and could see other patients getting help. Her therapists marked her progress on the hallway wall to show how far she was getting each day.
“Every time we’d walk, everybody in the hallway would stop and watch her and clap and cheer,” Cindy said.
Amanda was a determined patient, Flood remembers. By the time she was discharged on May 3, staffers at the unit had fallen in love with her “sweet soul.”
“The day she left, there were a lot of tears shed,” Flood said. “This case was very remarkable how bad she was and how far she came.”
Amanda still needs physical therapy at home, but now, it’s her parents who are watching her make progress every day.
She’s back to swimming in the family pool, though she still needs a walker to get around the house and yard. Her parents hope that one day soon, she’ll just forget that she uses it.
“She’s a tough little girl; she always has been,” her father said. “I always believed she would walk again.”
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