ST. LOUIS (AP) - Much of what 2-year-old Ke’Aiden has touched since birth are hard medical wires, latex surgical gloves and plastic toys. He is fed through a tube in his nose. He associates things going into his mouth with the pain of intubation or infection, so he clenches his jaw shut when anything comes near. Because he has been so sick for much of his short life, he has yet to learn to talk or stand.
A physical therapist uses a harness to help his legs learn to bear weight. An occupational therapist tries to get him to eat by snacking in front of him, safely brushing his cheek with crumbs. A specialist lets him explore textures with a feather, sandpaper, yarn and a brush.
“We have to let him know there are other things out there,” said his child life specialist Tyler Robertson.
All Ke’Aiden has known since birth has been a hospital room at St. Louis Children’s Hospital. Because of a high-tech mechanical ventilator helping him breathe, he’s only felt the outside world briefly a few times.
The breathing machine, a new technology that more safely assists the fragile lungs of premature babies, is typically used for a short period before a newborn gradually weans from the assistance. But for some reason, Ke’Aiden’s lungs are not getting better. The machine that saved his life is now keeping him from fully living it.
The St. Louis Post-Dispatch (https://bit.ly/22GRTZB ) reports that he’s the second child at the children’s hospital whose body is unable to wean from the machine.
Jaxen Halfhill is 3 years old and has spent more than two years in the hospital tethered to the ventilator, his physical abilities much like Ke’Aiden’s.
While medical advances are saving the lives of babies born before they should be, and even pushing the limits of viability to babies born at 22 weeks’ gestation, their cases are reminders that technology doesn’t always work as expected. Instead, doctors and families are left figuring out how to deal with the unexpected results.
“They represent a small but significant group of children who, on one hand, are success stories of our technology, but on the other hand, have challenges,” said Dr. Sessions Cole, the hospital’s chief medical officer. “The parents ask, ‘What is going to happen to him, doctor?’”
Doctors don’t know how long each child will need the ventilator, when he will be able to go home or what his life will be like. “The best we can say is that he is writing his own textbook,” Cole said.
Behind the medical teams trying to figure out how to make them thrive and get them home is the steady love of their families, coming miles away from school or work to be by their sides.
Ke’Aiden beams, squeals and falls over from happiness when his mom appears in the doorway. “Hi, pumpkin,” she says.
Crossing the $1 million mark
The new mechanical ventilator is called Neurally Adjusted Ventilatory Assist, or NAVA. Rather than long-used ventilators triggered by a person’s effort to suck air, the NAVA detects when the brain is about to signal the breathing muscles to contract. A sophisticated computer algorithm synchronizes the timing and amount of ventilation with the neural transmission, perfectly matching a patient’s breathing requirements.
With typical types of ventilation, a baby’s immature lungs are more prone to injury, disease and muscle atrophy. It can be so uncomfortable that babies have to be sedated. The NAVA is more tolerable and allows for the lungs to better grow and heal.
The technology was first introduced in 2008 and has become more widespread in the past two years, said Dr. Howard Stein, director of neonatology at Toledo Children’s Hospital, who has studied the use of NAVA. “Our experience has been that patients come off the ventilator quicker, have better tolerance to ventilation, and they do very nicely with it,” Stein said.
Other premature babies have sometimes needed ventilators for months, but they are able to leave the hospital with systems that can work at home, where they are more apt to thrive. The more complex NAVA must be administered at the hospital.
St. Louis Children’s Hospital has used the machine successfully on patients for about four years, more intensely in the past two. Cardinal Glennon Children’s Medical Center acquired NAVA in the summer of 2014 and has used it without problems.
Ke’Aiden and Jaxen were placed on NAVA when no other options were working - Ke’Aiden just before his first birthday, and Jaxen just after he turned 1. The boys have been unable to tolerate attempts to reduce the support because Ke’Aiden’s lungs have not kept up with the growth of the rest of his body, and the walls of Jaxen’s windpipe remain too weak.
“It is likely that these unusual children would succumb to the effects of other ways we have historically used to keep the lungs of these children functioning,” Cole said.
Ke’Aiden’s lungs seem to be growing very slowly. Doctors are also weighing the risks of possible surgeries for both boys, looking at scenarios that have never been done. “We have no road map,” Cole said.
Charges for Ke’Aiden’s care alone have crossed the $1 million mark, hospital officials said. Medicaid pays for a small portion, but the hospital absorbs the rest.
Doctors say when they place a baby on a ventilator, the assumption is always the baby will improve and no longer need it. Nothing predicts which babies will fail. When faced with uncertainty, parents almost always fight for a chance.
“The question is not so much about the technology, but about the baby,” Stein said. “If we could predict how our babies are going to do, we could have much smarter conversations with families. We try to make the best decisions we can based on the information we have about the technology and the patient.”
Second hospital birthday
Nothing is going as planned for Ke’Aiden’s mother. Kindness Singano, of Belleville, is 19. “I wish I hadn’t gotten pregnant so early, but now I’m just trying to do everything I can to be the best mom,” she said. She wishes Ke’Aiden’s father was more involved.
Singano was less than halfway through her pregnancy when she started having problems. Tests revealed problems with her placenta. Blood was not flowing well to the fetus. She spent a month on bed rest, including three weeks at the hospital under close observation. The fetal heartbeat dropped dangerously low, requiring a C-section. Ke’Aiden was born at 27 weeks, weighing just 1 pound, 11 ounces.
“What kind of chance does he have?” Singano remembers asking. The first 24 hours were crucial, doctors told her. If he got through that, he was much more likely to survive.
At 5 months old, Ke’Aiden took a turn for the worse. Because of his struggles to breathe, he underwent a tracheotomy so he could get air through a tube in his neck. He was heavily sedated.
Searching for options, Singano learned about NAVA from Jaxen’s mom on a Facebook group for mothers with premature babies. Singano decided to transfer Ke’Aiden from Mercy Hospital St. Louis, where she gave birth, so he could have access to the technology and the lung transplant program at St. Louis Children’s. He was 9 months old.
Ke’Aiden began NAVA just before his first birthday in November 2014. Singano never imagined he would celebrate his second in the hospital as well. “I saw people taking their babies home constantly, and it was never us,” she said. “It’s still not us.”
Singano is working on her associate’s degree in science at Lewis and Clark Community College, near where she used to live in Alton. She also works for Easter Seals Midwest, caring for people with disabilities in their homes in St. Louis.
She makes it the hospital to see Ke’Aiden nearly every day, except when she’s been sick. “I’m worn out,” she said, “but that is not going to stop me. I can’t abandon him.”
They play on his alphabet mat, read books or watch his favorite movie, “Madagascar.”
She’s watched her sick baby grow into an engaging and playful boy who lights up at attention.
“If he didn’t have to go through all this, he’d be eating. He would be playing. He’d be running around. He would be home,” she said. “But at the end of the day, this is his life, and we try to make the best of it.”
She was determined to make Ke’Aiden’s second birthday special. She wanted him to get out of his room. She wanted him to see his aunts, uncles and cousins.
The medical logistics were tough, but the nurses who have become Ke’Aiden’s second family made it happen, even providing “Madagascar”-themed decorations and outfit for the birthday boy.
Family members donned gowns and gloves to prevent infection and visited a few at a time. He marveled at a cake, even though he wouldn’t eat it. “Ke’Aiden loves attention, and he got more attention than he ever got that day,” his mom beamed.
Seeing babies happy. Seeing families happy. Seeing the love between them. In a world of uncertainties, Cole said, “That motivates all of us to keep going.”
Information from: St. Louis Post-Dispatch, https://www.stltoday.com
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