Case Study: Supporting a Determined Young Girl with CCMS to Thrive at School

Coyle Homecare provide complex care services designed to support individuals with complex care needs within the comfort of their own homes. This case study focuses on Fiona, a bright and determined 10-year-old girl living with Cerebrocostomandibular Syndrome (CCMS), a rare genetic condition affecting her jaw structure and airway.

 

Background

Due to her complex airway complications, Fiona has a tracheostomy in situ and requires gastrostomy feeding for all nutrition and hydration needs. She also has kyphoscoliosis and moderate hearing loss, for which she uses hearing aids. Despite these significant medical complexities, Fiona has no learning disabilities or developmental delays. She attends Frank Barnes Deaf School for Children, where she communicates confidently using British Sign Language (BSL). Fiona is an active, social child who loves physical activities, playing with friends, and participating in school life.

Fiona's care requires expert tracheostomy management, including emergency tube changes, precise feeding protocols through her gastrostomy, and vigilant monitoring for respirator complications. The challenge was to provide this intensive medical support whilst enabling Fiona to live as independently and joyfully as any other 10-year-old.

 

Goals Identified

Following comprehensive assessment, Coyle Homecare identified the following key goals in partnership with Fiona's parents:

• Ensure Fiona can attend school daily, participate in all activities including PE, outdoor play, and school trips without restrictions due to her medical needs.
• Provide expert tracheostomy care and monitoring to prevent blockages, infections, and respiratory distress, eliminating unplanned hopsital admissions.
• Implement a carefully structured gastrostomy feeding regime that supports healthy weight gain and growth whilst accommodating Fiona's tolerance levels and school schedule.
• Empower Fiona to self-advocate, make choices about her care, and participate in age-appropriate activities without unnecessary limitations.
• Enable friendships, social inclusion, and normal childhood experiences through consistent, unobtrusive support that respects Fiona's dignity and independence.

 

Interventions & Support Provided

Coyle Homecare provided a dedicated Healthcare Assistant trained in advanced tracheostomy care to accompany Fiona to school daily from Monday-Friday, 8am - 4pm. We also developed a carefully paced feeding schedule to help Fiona cope with high-volume feeds. This gentle approach, combined with constant communication with Fiona about her comfort levels, ensured optimal nutrition whilst minimising discomfort.

All staff assigned to Fiona were trained to recognise signs of feeding intolerance and adjust timing accordingly whilst ensuring Fiona received complete nutrition for healthy growth. They also completed Basic Life Support certification and intensive training in Fiona’s specific emergency protocols. Furthermore, comprehensive equipment checks at shift start and emergency bag maintenance ensured readiness for any eventuality, giving Fiona’s family complete confidence in her safety.

Fiona joins outdoor play regardless of weather, engages in physical activities like running, jumping, and climbing, and attends school trips. Staff provide vigilant but unobtrusive supervision, allowing Fiona to determine her own limits and take breaks when needed, fostering genuine independence and confidence.

Finally, staff learned BSL to communicate directly with Fiona, respecting her as an active participant in her care decisions. Close collaboration with Fiona’s parents, school staff, and multidisciplinary team ensured seamless communication and coordinated support.

 

Outcomes Achieved

The implementation of Coyle Homecare's support has delivered significant positive outcomes:

• Fiona has experienced no unplanned hospital admissions since Coyle Homecare began providing her school support.
• The tailored feeding approach has resulted in stable weight gain and growth parameters, with Fiona tolerating her feeds well and experiencing minimal discomfort.
• Fiona attends school daily without medical interruptions, participating fully in her education and maintaining strong academic progress consistent with her peers.
• Fiona has attended multiple school trips, including residential experiences.
• Fiona actively participates in determining her care routines, self-advocates when she needs breaks or adjustments, and engages confidently in physical activities.
• Experience a normal childhood, with medical needs managed seamlessly in the background.

Fiona has also been able to enjoy the following special moments:

• Attend residential school trips, including Center Parcs, creating cherished memories with friends.
• Participate fully in outdoor play in all weather conditions, running, jumping, and climbing alongside peers.
• Join school lunches with friends, tasting food and enjoying social mealtimes.
• Engage in physical education and active play without restrictions.

 

Fiona’s case study exemplifies how expert homecare can transform the lives of children with complex medical needs. Through highly trained staff, proactive clinical management, and a genuine commitment to enabling rather than restricting, Coyle Homecare has eliminated hospital admissions whilst empowering Fiona to live a full, active, joyful childhood.

Coyle Homecare's personalised care packages are designed to make a meaningful difference. Whether it's complex clinical support or everyday assistance, learn more about our full range of services and how we can help by visiting our Homecare Services page, or by contacing a member of our team.