At a time when most first-time parents are learning to change diapers and install car seats, Jeremy and Brittany Rawls were learning to use equipment that kept their child not just healthy, but alive and breathing.
Their only daughter Emelia was born with severe bronchial pulmonary dysplasia, BPD – a form of chronic lung disease that impacts the lungs and airways, making it difficult to breathe.
The first three years of Emelia’s life were spent changing out her tracheostomy tube and giving her feedings. They were spent making sure her oxygen levels were where they needed to be, and her medications were up to date.
Life as a child with chronic lung disease is difficult – but for Emelia and her family, it was all they knew. Until now.
A different kind of cure
Chronic lung disease is a diagnosis without a real cure, but not without real hope.
With a full-team approach – and a best hospital and specialty care team like Emelia had at Levine Children’s Hospital – parents like Brittany and Jeremy can have new hope for the future. And kids like Emelia can eventually outgrow and overcome those early challenges.
“There’s no one medicine, no one thing you can do to correct that abnormality or defect,” says Ashley Chadha, MD, Emelia’s pulmonologist at Levine Children’s. “It takes time, years of support, and a lot of hard work by the family.”
From pulmonologists to cardiologists to gastrointestinal doctors, little Emelia has seen more specialists than many adults – but her family can’t imagine having her health in anyone else’s hands. “If it wasn’t for them, she might not be here today. That’s the best thing about it. They took such good care of her here that we’re more than grateful for what they did for us,” says Jeremy.
Walking on sunshine
Emelia is living proof that the best cure for chronic lung disease is the support of a full care team and a committed family.
The 3-year-old used to be totally dependent on a ventilator to help her breathe, as well as a tracheostomy tube, or artificial airway. But today, she needs neither and is breathing completely on her own. “Those are big milestones we shared together,” says Dr. Chadha, on Emelia’s continued progress.
These days, Emelia is really coming into her bubbly personality, and she gets to enjoy all the things toddlers her age should be enjoying – especially books. And that’s not all. “We’re still a little wobbly, but she’s finally learning to walk. She loves to get herself going and explore anything and everything she can get her hands on – or get into,” says Brittany, laughing.
Jeremy and Brittany Rawls are catching their first glimpse of parenthood without chronic lung disease, and they’re getting into a more normal routine. And as for Emelia? Well, she’s just learning how to be a healthy kid for the very first time in her life.
