First-time parents, Sadie and Codey Carlisle, were excited to not only have one, but two babies to fill their home with joy and laughter when they found out Sadie was pregnant with twins. But things took a turn when Sadie’s water broke at 19 weeks – indicating that there would be problems to come.
“I think very early on we knew that it was going to be a really hard, long journey. But as long as our babies were fighting, we weren’t ever going to stop fighting either,” shared Sadie.
Giving birth to Nellie and Clifford
Two weeks after her water broke, Sadie gave birth to her daughter Nellie and was admitted at The Mother Baby Center in St. Paul. Due to the premature pregnancy complications, Nellie passed away shortly after birth.
Still pregnant with Clifford, Sadie remained in the hospital so that the care team could closely monitor them both. It was at 24 weeks that Sadie gave birth to Clifford, who weighed just over a pound and had a 1% chance of survival when Sadie’s water broke at 19 weeks. Clifford was immediately transferred to the Children’s Minnesota neonatal intensive care unit (NICU) for specialized care after birth.
Clifford’s NICU journey
When babies are born prematurely, one of the biggest concerns is their underdeveloped lungs that make it hard for them to breathe on their own. Clifford spent months on the ventilator and eventually underwent surgery with Brianne Roby, MD, pediatric otolaryngologist and medical director of the cleft lip and palate program at Children’s Minnesota, when he was 6 months to get a tracheostomy to help his breathing.
However, Clifford’s journey was far from over. Throughout his challenging 10 months in the NICU, Clifford battled various infections and was so critically ill at times that he had to undergo surgery in his NICU room because he couldn’t be safely moved to the operating room. His ventilator and oxygen settings were also often maxed out due to severe respiratory failure. But despite it all, Clifford showed extraordinary strength and, after nearly a year, was able to leave the NICU and finally go home.
The care team became like family to Sadie and Codey and gave them hope when it seemed like there was no light at the end of the tunnel.
“Throughout that whole process there were so many times where we were told that Clifford probably wouldn’t make it through the night, but the team at Children’s Minnesota truly never gave up, even when it felt like we were running out of options. They would find something else to try. I feel like Clifford is here because they never gave up,” said Sadie.
Continued care at Children’s Minnesota
By summer 2025, Clifford’s lungs had grown strong enough for him to breathe on his own without a ventilator, which meant he could finally have his tracheostomy removed. However, a new complication arose: the section of Clifford’s airway above the tracheostomy was beginning to collapse. This meant that he would also need to undergo a major airway reconstruction.
The family came back to work with Dr. Roby and Andrew Redmann, MD, medical director of the aerodigestive program, to remove Clifford’s tracheostomy and do an airway reconstruction where cartilage was taken from his rib cage and placed in his airway to help it stay open. For Clifford’s ongoing respiratory needs, the family now visits the pulmonology team twice a year.
More recently, Clifford was diagnosed with cerebellar hypoplasia, a condition where his cerebellum is underdeveloped, and apraxia, a neurological disorder that affects motor skills. To support his development, he has been getting weekly care with the occupational and speech therapy teams at Children’s Minnesota and will participate in an upcoming three-week physical therapy intensive.
Clifford today
Today, Clifford is a joyful and healthy 2-year-old, a big brother to Tucker, and has a smile and laugh that can light up the whole room. Some of his favorite things are animals, music, spending time outdoors and playing in the water. Clifford has also started crawling and taking small, assisted steps – something that his parents weren’t sure he’d ever be able to do.
“Every milestone he reaches, big or small, is celebrated with so much joy and gratitude and feels like a true miracle,” shared Sadie.
Despite all the mobility and speech challenges that come with his new diagnoses, Clifford meets every day with determination and is doing amazing with therapy. He is currently learning how to use a gait trainer to help him learn how to walk and alternative communication tools.
Sharing Clifford’s story
What started as just advocating for Clifford and his care has now become something bigger for Sadie. Through sharing her family’s story – whether it be on her personal platforms, Children’s Minnesota channels, or speaking opportunities – Sadie hopes to break the stigma around disability and advocate for policies and programs that can help support children like Clifford.
