Savannah's Story

Eleven-year-old Savannah immediately fills any room she enters with her bright smile and sassy personality, never letting her complex medical condition define her.

At birth, Savannah was diagnosed with a rare and life-threatening genetic disorder, Congenital Central Hypoventilation Syndrome (CCHS). CCHS affects how the body controls breathing, especially during sleep. This meant she required 24/7 breathing support from a ventilator. In addition, she was diagnosed with congenital myopathy, which caused muscle weakness throughout her body. At just four months old, Savannah was admitted to Blythedale Children's Hospital for the first time to receive Post Acute Neonatal Care and Feeding Therapy. 

During this time, Savannah's parents, Erica and Jose, underwent extensive training in their daughter's complex care, learning to manage her ventilator and the gastrostomy tube (G-tube) for supplemental feedings. When Savannah was discharged as an infant, she was fully dependent on the ventilator. However, as she grew older, she was able to wean off the ventilator during the day, breathing through a tracheostomy collar, and only needing the ventilator while she slept. 

Despite her medical challenges, Savannah experienced all the typical childhood milestones—attending school, playing with friends, and later, doing her makeup, and dancing on TikTok.  

A Setback After Spinal Surgery

In August 2024, Savannah underwent spinal surgery to correct her scoliosis. Unfortunately, the procedure impacted her ability to breathe, requiring her to go back on the ventilator 24 hours a day. She was readmitted to Blythedale Children's Hospital for Complex Post-Surgical Rehabilitation and ventilator weaning.  

"She came to us after she had her scoliosis surgery," said Shaziyh Shaikh, MD, Attending Physician on the Pediatric & Adolescent Unit at Blythedale Children's Hospital. "Because of her underlying condition, it set her back a little bit from a respiratory standpoint."

When Savannah was admitted, she was monitored closely by an interdisciplinary team, including a pulmonologist and respiratory therapists, who worked on weaning her off the ventilator and returning her to her pre-surgery baseline. The team also conducted a sleep study to reassess her ventilator settings, as her condition can change over time. 

Savannah also underwent intensive rehabilitation, receiving both occupational and physical therapies. At first, she was wheelchair-dependent and wasn’t able to sit up on her own. Her therapists focused on rebuilding her strength, starting with small tasks.   

“At first, we would work on brushing her teeth and standing at the sink for just 10 seconds at a time, and then take a long break,” said Bridget Horgan, ODT, OTR/L, Savannah's occupational therapist.  

As her therapy progressed, the team found inspiration in Savannah’s love for TikTok. Before surgery, she frequently posted dance videos and ‘Get Ready With Me’ (GRWM) clips, showcasing her makeup and skincare routines.

Horgan tailored therapy sessions to help Savannah regain her ability to do what she loved. Activities like opening containers and standing at the sink for longer periods were framed as steps toward using her beauty products again.

“When we related (therapy) back to why we were opening containers in Therapy Village and explaining that this would help her get stronger to open her makeup containers, it really helped Savannah,” said Horgan.

Kasey Guglielmo, PT, DPT, Savannah's physical therapist, echoed the approach of completing therapies that would help Savannah get back to doing the things that she loved to do. 

"It wasn’t just doing an exercise to complete an exercise," said Guglielmo. "It translated into her real life. Instead of just moving to get better, it was moving to be herself."

With determination, Savannah regained her strength, returned to her baseline mobility, and was successfully weaned off the ventilator during the day. She began attending school and therapy using a tracheostomy collar, needing the ventilator only at night. 

A Community of Support

Throughout her time at Blythedale, Savannah could often be found playing games with other patients and listening to music at the Nursing Pod.

“When we got here in August, we would go outside and record TikToks, and do different dance moves” said Erica, Savannah’s mom. "It helped us continue to bring over the different therapies when she wasn’t working with Kasey or Bridget." 

Savannah also formed meaningful friendships, both with other patients and with Hospital staff.

“I think what makes me different and rare, is, since I have a disability, I'm different from other people," reflected Savannah. "But once I have a bunch of friends and stuff, they see me as who I am." 

Her parents, Erica and Jose, also found a strong support system at Blythedale, bonding with other parents and caregivers. Jose was even crowned the Uno champ after winning several matches. 

"It takes a village," Erica said. "It's not only the employees and the therapists that are here, but also the other families. Sharing your stories, seeing the commonalities, and building a community really helped us." 

The Power of Perseverance

Savannah's remarkable progress was not just a testament to her own strength, but also the unwavering support of her parents.

"As far as Savannah's recovery here, we have to acknowledge her parents," said Jennifer Bates, NP. "They were here every day, every step of the way. And it definitely shows, that with parent support, how quickly they're able to recover their function and how working with their families in general makes it a much easier process when the parents and the medical team are on board together."  

After months of dedication, Savannah was discharged from Blythedale in February, heading back home to rejoin her community and continue doing what she loves—dancing.