Every day for many weeks, Letitia Washington-Roberson kept vigil at her daughter’s hospital bedside, praying for improvement, peppering doctors with questions and whispering positive phrases into her daughter’s ear.
One day, as she returned from an errand, she heard a greeting unspoken for 79 days.
Stopping in midstride, she looked at her 21-year-old daughter. “What’d you say?”
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With that, Mom sobbed.
Even nurses and doctors had to wipe faces dry as they watched Washington-Roberson race through the cardiovascular intensive care unit praising Jesus and everyone there because her youngest daughter could talk again — one of several milestones in a battle some at St. Luke’s Mid America Health Institute feared they would lose.
Thursday marks a year since Lyric Washington-Gaw, a college student who wants to run her own beauty salon, finally left the hospital after a nearly four-month stay, about half of which she doesn’t remember. She slept through Christmas, New Year’s and her 21st birthday.
Still not fully recovered, she remains tethered to oxygen. It’s little bother, considering what could have been.
“I want to be an advocate for other people so they don’t give up,” she said during a recent return visit to St. Luke’s. “When you are down … you just got to keep faith. Without faith, I don’t know what would happen.”
Doctors still don’t know why Lyric’s lungs failed. Tests never confirmed a cause.
After other respiratory treatments did not help, St. Luke’s doctors turned to a machine that got its start in the 1970s helping premature babies. Her doctors doubt Lyric would have lived without that machine, which for more than six weeks took over her lungs’ job of cleaning and oxygenating her blood.
They also credit the power of prayer. And a mother’s unwavering determination.
Though doctors often see parents devoted to sick children, something about Washington-Roberson felt different.
“There was one time ... I just literally broke down talking to her because I didn’t think Lyric was going to survive, and I didn’t want to let her down,” said Michelle Haines, one of Lyric’s doctors and medical director for Saint Luke’s cardiovascular intensive care unit.
In situations where Haines would have suggested another parent prepare for the worst, she held back.
“I felt like she knew better,” Haines said. “I don’t know how else to put it. … I felt like it was out of my hands, in a way.”
Washington-Roberson often felt helpless.
But never hopeless.
‘Just save my baby’
Lyric’s lung problems started before Thanksgiving 2015.
She spent four days that month in Truman Medical Center-Hospital Hill for possible pneumonia.
Days after being discharged, she grew sicker. Home alone one morning, she labored to breathe. Her mother and father called, concerned. Dad dispatched her brother Devon Gaw to get her to the hospital.
As Gaw pounded on her front door, Lyric struggled to dress. Lumbering up 14 steps from her basement bedroom, panting, took seemingly forever.
At Truman, emergency staff poked her with needles and peeled off her clothes.
“Your lungs look terrible,” a doctor said after studying an X-ray. “It’s amazing you’re still upright.”
Early the next morning, Dec. 2, 2015, doctors asked to intubate her — slide a breathing tube down her throat under sedation so they could hook her to a ventilator.
Lyric sent texts to her family shortly before her world faded to black.
Whereas healthy lungs are like sponges that expand and contract, hers were turning solid, like cement becoming concrete.
Pulmonologist Diana Dark, who also worked at St. Luke’s and knew of the oxygenation machines, searched out Lyric’s mother in the ICU waiting room.
“If this were my child,” Dark said, “I’d get her to St. Luke’s.”
In a car trailing the ambulance, Washington-Roberson prayed.
“Lord, just save my baby.”
53 units of blood
In Lyric’s first few days at St. Luke’s, doctors tried different procedures to turn around her lungs. She had acute respiratory disease syndrome, they told her family.
Her kidneys soon failed. She developed high blood pressure.
Overwhelmed, Washington-Roberson went home one night, entered Lyric’s bedroom and knelt. “Trade me for Lyric,” she prayed through sobs before rising to shower, still crying. As water washed over her, peace enveloped her. She believes it was the Holy Spirit telling her that Lyric would be OK.
That gave her the strength, hope and perseverance to keep going, she said — just as the going got more difficult.
The time had come to try a procedure used only on the sickest of patients, those in severe respiratory failure: extracorporeal membrane oxygenation, or ECMO, which does the lungs’ job — or if needed, the heart and lungs’ jobs — while letting the lungs rest and heal.
Early ECMO attempts on adults did not prove valuable, but better technology came along before the H1N1 flu epidemic in 2009, and improved results encouraged physicians. A 2009 European study also showed higher survival rates than previous trials. The number of adults treated annually with ECMO worldwide nearly tripled between 2008 and 2015, while the number of hospital ECMO centers doubled.
At St. Luke’s in 2009, seriously ill flu patients facing perhaps an 80 percent chance of dying without ECMO instead survived at a 70 percent clip with it, Haines said. By late 2012, the University of Kansas Hospital had added ECMO. When deadly flu hit in 2013, both hospitals used it with above-average results. One St. Luke’s patient spent 48 days on ECMO, a local record.
Lyric nearly matched his mark.
Eight days after she arrived at St. Luke’s, specialists inserted a cannula, which resembles a long hollow rod, into her jugular vein. They guided it to her heart before attaching two tubes to where the rod’s top end protruded from her neck. The ECMO system pulled spent blood from her body and sent it through a filter that replaced carbon dioxide with oxygen. Then the machine pumped the blood, rewarmed to body temperature, back to her heart.
Lyric’s mother allowed only family to visit. She didn’t want others to see how dreadful Lyric looked, especially after doctors added a tracheotomy to a neck already taxed by the cannula on one side and a dialysis port on the other.
“Tell me the truth,” she’d tell the doctors and nurses. “Do not sugarcoat it.”
Most days, she arrived by 6 a.m. She’d whisper, “You know Mama’s here” to Lyric before rubbing her with lotion and turning on praise music. She kept a journal noting medical updates and setbacks.
During Lyric’s 27th day on ECMO, Washington-Roberson’s cellphone rang as she bought groceries. “Get back to the hospital,” the caller said.
The cannula had slipped. Lyric needed emergency surgery that included adding a cannula through her groin. Doctors ordered seven units of blood, part of the 53 units she would receive overall.
It took many more days before Lyric’s lungs showed improvement. Doctors began testing her lungs by temporarily turning off the ECMO oxygen.
Then early on Jan. 23, 2016 — her 46th ECMO day — Lyric’s belly began swelling from internal bleeding.
Called before sunrise, Washington-Roberson sped with her husband to the hospital. Color had drained from Lyric’s face.
Staff squeezed Lyric and her bed, the ECMO machine, a traveling ventilator, a rapid transfuser, the blood warmer, a pole of IVs and about eight people into one elevator to take her for a CT scan and then to the operating room.
Surgeons removed five liters of blood from her belly — and both cannulae.
Lyric was off ECMO.
“I just thank God that they (her lungs) had healed enough,” Washington-Roberson recalled, her voice shaking. “She still had the tracheotomy, but she didn’t have to have ECMO on her, and they saved her life because she didn’t bleed out.”
Still, Lyric slept.
‘On the right road’
Nurses helped the family decorate Lyric’s room for her 21st birthday on Jan. 26, 2016. Siblings, parents and grandparents came.
A few mornings later, Lyric opened her eyes, saw the birthday cards and balloons and tried to make sense of it. Her last memories came from Dec. 2.
She saw her mother writing something but could not get her attention. She tried to talk. Nothing came out. Her sister Ebonique Washington entered the room and noticed Lyric trying to move.
Lyric mouthed, “Can I talk?” No, her sister answered. “Can I walk?” Again, no.
Her body was so weak, she couldn’t even push the nurse call button. Gaining strength became goal No. 1. Once she could move a finger, she wanted her phone. She needed to check Facebook.
On Feb. 18, with Lyric’s mother gone, staff added a device to Lyric’s tracheotomy opening to allow her to talk. Her grandparents and sisters coached her through practice words. When Washington-Roberson returned, Lyric surprised her with that “Hi, Mama” greeting.
“It gave me hope for a better day,” Washington-Roberson said. “I knew … we were on the right road.”
Weeks of rehabilitation remained. Lyric’s muscles had to learn to work again. She celebrated walking down a hallway.
Doctors discharged her March 30, a year ago Thursday. Though Lyric craved home, she also feared it, especially those stairs. Mom helped by moving Lyric to a main-floor bedroom, on the same level as the kitchen.
Recently, Mom put finishing touchings on the journal, which she plans to give Thursday to her daughter, who hasn’t read it.
The last line quotes something a rehabilitation nurse told Lyric:
“You stared death in her face and gave it a raspberry.”
St. Luke’s has five extracorporeal membrane oxygenation machines and nearly 60 specially trained staff, from surgeons to nurses, in its Kevin K. Nunnink ECMO Program, named after the first patient, in 2009. The hospital uses them for pulmonary problems, like what Lyric Washington-Gaw experienced, as well as a more complicated system for combined cardiac and lung treatment.
Of St. Luke’s 96 ECMO patients, about two-thirds needed it for lungs only. The University of Kansas Hospital, which started its ECMO program in late 2012, has treated 34 patients, nearly two-thirds for lungs and heart combined. Many patients need ECMO only for a few days, others for weeks.
Doctors at both hospitals receive patients from other hospitals. They stress the need to get patients early enough that ECMO can help. Timing is critical, said Brigid Flynn, co-director of the cardiothoracic intensive care unit at KU Hospital.
“If you can get a sick patient here early, we can help them,” said Michelle Haines, the director of St. Luke’s program.