Carlie Rose Jackson was born at 31 weeks gestation on August 16, 2018 at SSM Health St. Mary’s Hospital. Along with some anticipated feeding and growing issues, Carlie also had tracheobronchomalacia, which is the collapse of the airway when a baby exhales, making it difficult for her to breathe. Tracheobronchomalacia can result in recurring respiratory illnesses or make it difficult to recover from a respiratory illness.
After spending a few weeks in the NICU at SSM Health St. Mary’s, Carlie was transferred to SSM Health Cardinal Glennon Children’s Hospital on Sept. 9, 2018. Mom, Briana, was already familiar with SSM Health Cardinal Glennon since her other son, Chase (5 years old) was also born premature, and is a current patient for his general pediatric needs at The Danis Pediatric Center.
On October 12 (Carlie’s original due date), Carlie had her 1st surgery, an Aortopexy. The Aortopexy procedure provides immediate and sometimes permanent relief of some types of severe tracheobronchomalacia. This surgery opens up the trachea by moving the body's main blood vessel and attaching it to the back of the breastbone (sternum). Following that surgery, Carlie made sufficient strides in her growth and development to enable her to go home in November, but only a few days after being at home, Carlie developed breathing difficulties, vomiting, lethargy and dehydration. Briana brought her to the Emergency Department, hoping it was just a common cold; however, Carlie was diagnosed with rhinovirus and admitted to 2 South. She was treated and released, and home for only 7 days before returning to the ED on December 1 with more breathing difficulties again. This time, Carlie was admitted to the Pediatric Intensive Care Unit, which Briana says was the “scariest time” of her life. “Watching her struggle to breathe broke my heart. I never thought I’d have to make decisions that were so hard just to keep her alive and breathing,” recalled Briana. Carlie was intubated, on a ventilator, and for the next few weeks, continued to have bradycardic episodes and struggled breathing with the airway issues that are part of her condition.
On December 24, Christmas Eve of 2018, Briana made a difficult decision with Carlie’s medical team and consented to Carlie having a tracheostomy placed. Carlie started off 2019 remaining at SSM Health Cardinal Glennon, and still remains hospitalized at present with a goal of getting her home as soon as possible. She will need to keep her tracheostomy and ventilator until she grows and gets older to give her airway and supportive tissues enough time to strengthen and thicken. This means that together, Briana, Carlie and her medical team must work to find the proper ventilator that supports Carlie’s needs, but is also suitable for the home and covered by Briana’s insurance. Along with two additional surgeries since December (a G-button placement for feeding, and surgery to remove a blood vessel wrapped around her vocal cord) – finding the right ventilator for Carlie has been a focal point of her care plan. Her “second home” has been the 3rd floor Transitional Care Unit, where she has brightened the halls and the hearts of staff who have cared for her for several months now. Briana juggles her responsibilities of caring for her son, Chase (who just started kindergarten), while also spending as much time as possible in the hospital with Carlie, learning her care and discussing plans for home as Carlie’s care evolves.
Carlie has been followed by multiple specialists and teams at SSM Health Cardinal Glennon including Otolaryngology, Pulmonology, Cardiothoracic Surgery, General Surgery, Footprints, Occupational Therapy, Speech Therapy, Physical Therapy and Social Services, just to name a few. She is enrolled in the STARS program, and will also be part of Danis Pediatrics and our Complex Care program for care coordination, upon discharge.
On August 14, 2019, Carlie was placed on a Trilogy ventilator (the 4th type of ventilator that has been trialed during her stay) – with a hope that this will be the ventilator she can be successful with and take home with her. As of August 16, Carlie’s first birthday – she was doing great and all smiles.
In celebration of her first birthday, the TCU staff joined with mom, Briana to throw Carlie a special Minnie Mouse first birthday celebration. Mom, Briana, states she “can’t believe how far she’s come. I’m just blessed that she’s alive to celebrate her first birthday, and I can’t wait until the day I can bring her home.”
Once Carlie is discharged, she will follow up as needed with the Complex Care Team and her multiple specialists, and will also have her general pediatric needs followed by her pediatrician at The Danis Pediatric Center, along with her older brother, Chase.