Lincoln: Overcoming Challenges and Winning Hearts

A Bumpy Beginning

At just 2 days old, Lincoln was transferred from a hospital in Fort Collins to Children’s Colorado for emergency surgery to remove a blockage in his colon. As Lincoln recovered, he struggled to breathe.Doctors performed a tracheostomy, creating an air passage by placing a tube in his windpipe. Lincoln’s parents learned that their baby boy also had cystic fibrosis.

For the first week of his life, Lincoln was on a ventilator to assist his lungs, and his heart stopped multiple times. Doctors discovered that his left lung was overinflating and putting too much pressure on his heart, causing it to stop working. His care team made the difficult decision to take out most of Lincoln’s left lung. Determined to give Lincoln the best possible chance of surviving, doctors at Children’s Colorado worked with doctors around the world to figure out what could be done to save his life and allow him to grow and thrive.

Ultimately, Lincoln was diagnosed with tracheobronchomalacia, a condition in which the trachea and bronchial tubes collapse, making it hard or impossible to inhale and exhale. Paired with his cystic fibrosis, this condition was making him very sick.

For four long months Lincoln stayed in the Neonatal Intensive Care Unit (NICU) while he recovered. Doctors gave him a feeding tube so that he could get the nutrients he needed to grow.  After his health improved, he went home for good when he was 10 months old.

Life Changing Medication

Like many kids with cystic fibrosis, Lincoln had a hard time gaining weight and growing. He also picked up sicknesses often. “The second year of his life he was sick every month and we were in the hospital every single time, the next year was similar – he was hospitalized nine times, we just couldn’t keep him healthy,” said Michele, Lincoln’s mom. Meanwhile, experts in the Children’s Colorado Breathing Institute helped to prove the safety and efficacy of the drug Trikafta®, a medication that can be life-changing for children with cystic fibrosis. When Lincoln began the treatment, his family felt a sense of hope they hadn’t experienced since his journey began.

Thanks to the research done at Children’s Colorado, Lincoln is now reaping the benefits of this new drug regimen. He now doesn’t have to take as many breaks while playing. He also started to gain weight and grow taller and hasn’t had to be hospitalized. Doctors are hopeful that ongoing research in cystic fibrosis could lead to a cure for the disease within Lincoln’s lifetime.  “Lincoln has his childhood back, and has and has a healthy future moving forward, he can now live a life without limitations,” said Michele.

Beyond researching drugs to treat the disease, Children’s Colorado also helped initiate the first newborn screening program in the country to diagnose cystic fibrosis, allowing for better interventions and treatments and adding years of life for these patients.

Surviving and Thriving

Thanks to the work being done at Children’s Colorado, with previously life-limiting conditions can now get the care and medicine they need to become healthy adults.

Lincoln still has regular checkups at Children’s Colorado, but overall, he is a happy and healthy 4-year-old. Despite the tubes, machines and doctors that have surrounded him his whole life, nothing has held Lincoln back. He loves to run around – sometimes wearing a superhero cape – and he is also doing gymnastics. Lincoln’s mom, Michele, says he has hit every developmental milestone along the way.

“Everything in our lives has lined up for us to be here at Children’s Colorado for Lincoln and to be taken care of by these amazing doctors. For that, we are so thankful,” said Michele.

Advocating for Pediatric Health Nationally

Lincoln, and his parents Michele and Layne were recently in our nation’s capital advocating on behalf of Children’s Colorado as part of Family Advocacy Day, a three-day event hosted by the Children’s Hospital Association where families share with federal lawmakers and staff what is needed to improve pediatric healthcare across the country.  

Lincoln and his parents met with members of the Colorado delegation on Capitol Hill to talk about child health priorities including the healthcare workforce, pediatric medical research and access to lifesaving specialty drugs.

While speaking with lawmakers Lincoln was able to brag about his recent baseball games that are keeping him busy.