At 2 and a half years old, Elliot Newcomb still hasn’t come home from the hospital yet.
Born Feb. 18, 2016, he arrived prematurely at the size of a baby at 28 weeks of gestation and was quickly placed onto a ventilator to get him breathing properly. Although this saved his life, there was still something wrong.
His parents, Sara and Bryan, had him undergo genetic testing to find out — and the results were troubling, Sara said Monday.
By resting on the ventilator, his condition actually worsened — Elliott was developing chronic lung disease and bronchopulmonary dysplasia, or BPD.
“With BPD, you want to exercise the lungs,” Sara said. “Naturally, babies on ventilators breathe very fast.”
BPD, which is common among premature infants, results in damaged lungs caused by a ventilator and causes long-term breathing difficulty, according to the American Lung Association’s website.
“The totality of the situation was hard,” Sara said.
Following a bronchoscope that looked at his breathing and airways from his lungs, doctors realized he had severe tracheobronchomalacia, “a rare condition that happens when the cartilage of the windpipe, or trachea, is soft, weak and floppy,” according to Cedars-Sinai Medical Center’s website. “This can cause the tracheal wall to collapse and block the airway, making it hard to breathe.”
After being moved from Kaiser Permanente Panorama City Medical Center’s Neonatal Intensive Care Unit to the Kaiser Center in Los Angeles’ Pediatric Intensive Care Unit, he remained in regular care. By the time of his first birthday, however, he was in a medically induced coma. This was done so that his body would not fight the intended use of the ventilator.
During a conference in March, doctors suggested to the Newcombs that they should “withdraw care,” as the services kept Elliot alive but did not improve his condition.
Weighing their options, the Newcombs were in communication with other parents whose children had the same diagnosis as Elliot through social media. Once they became aware of Nationwide Children’s Hospital in Columbus, Ohio, which conducts research on BPD in children, there was hope that Elliot would be able to move on with his life and recover.
Kaiser made use of Nationwide’s ventilation protocols to help Elliot. He received physical therapy to build his core and give his body some degree of movement of which he did not have while heavily sedated and sick.
“Nurses and respiratory therapists in the PICU were mystified at the results,” Sara added.
While Elliot has lived his life in a hospital, the Newcombs have had to continue raising their other young children, Violet and August, as well. Both of them have been in regularly healthy condition, according to their mother.
“Violet and August have not been on any antibiotics,” Sara said. “Elliot is the polar opposite.”
With his condition improving, Elliot will still struggle with hearing and vision due to his diagnosis, and due to several different medications he’s taking. Sara referred to his developmental future — like walking and talking — as a matter of “wait and see and look where the chips fall.”
And in a matter of weeks, Elliot is set to come home for the first time.
The challenge now is how to help Elliot moving forward, which resulted in getting community support for her son. Sara created the Instagram page “love4elliot” to share his story with friends and supporters. She also will make a GoFundMe page to help raise money for rehabilitation equipment and more physical therapy, along with a larger vehicle to help Elliot move around.
“It’s the luck of the draw when you’re a parent and you have a kid with medical problems,” Sara said. Through support and communication with parents dealing with the same problems, it has given her a sense of being a part of something bigger.
“You do tend to feel very isolated in it,” she said. “Now, I’m part of that family.”