If you are a parent or caregiver to someone with Trisomy 13, you know how challenging and overwhelming it can be. This disorder results from an extra copy of chromosome 13, which causes severe intellectual disability and numerous physical abnormalities. 

Common Issues and Frustrations

Coping with Severe Intellectual Disability

Individuals with Trisomy 13 often have profound intellectual disabilities, making learning and daily tasks difficult. Teaching basic skills and managing daily tasks can feel like an uphill battle, leaving you feeling frustrated and helpless. It’s important to remember that while progress may be slow, every small achievement is a significant victory.

Managing Developmental Delays

Significant delays in walking, talking, and self-care are common. These delays affect their ability to walk, talk, and perform basic self-care. Watching your loved one miss milestones while seeing other children progress can be heart-wrenching and stressful. Providing a supportive environment and celebrating small steps forward can help alleviate some of this stress.

Dealing with Heart Defects

Heart issues are prevalent, requiring regular medical care and sometimes surgeries. This means frequent doctor visits and treatments, which can be emotionally and financially taxing. The constant worry about your loved one’s health can add a significant burden, making it essential to find a supportive medical team you trust.

Handling Brain Abnormalities

Brain abnormalities can cause seizures and other neurological issues that need constant monitoring. Keeping these conditions under control requires constant attention and can be exhausting for caregivers. It’s crucial to have a robust support system and access to medical professionals who can provide guidance and emergency care when needed.

Addressing Physical Abnormalities

Features like cleft lip or palate and extra fingers or toes may require surgical intervention, adding complexity to your care responsibilities. Managing physical therapy for abnormalities and weak muscle tone can be overwhelming. Surgical interventions can be daunting, but they can significantly improve the quality of life for individuals with Trisomy 13.

 

Maintaining Muscle Tone

Weak muscle tone makes movement challenging. Physical therapy is necessary but progress can be slow, leading to frustration. Regular therapy sessions and home exercises are essential to maintain and improve muscle strength, helping your loved one achieve greater independence.

Managing Seizures

Seizures are frequent and unpredictable, requiring medication and careful monitoring. Their unpredictability can be one of the most distressing aspects of caring for someone with Trisomy 13. The unpredictability of seizures adds a layer of stress, making it hard to plan daily activities. A comprehensive care plan and medication regimen can help manage and reduce the frequency of seizures.

Overcoming Feeding Difficulties

Feeding difficulties due to weak muscle tone or cleft palate can lead to nutritional challenges. Ensuring adequate nutrition might require specialized feeding techniques and constant supervision. Nutritional concerns require special attention to ensure proper nutrition, adding to your daily responsibilities. Working with a nutritionist can help develop a feeding plan that meets your loved one’s needs.

Navigating Breathing Problems

Breathing problems, including apnea, are common and need ongoing medical attention and equipment. These issues often necessitate medical equipment and frequent check-ups, adding stress and worry to daily life. Proper respiratory support and regular monitoring are critical to ensuring your loved one’s health and well-being.

How Sunfield Home Howick Can Help

At Sunfield Howick, we offer specialized care for adults with intellectual disabilities like Trisomy 13. Our mission is to provide a nurturing and supportive environment where your loved one can thrive. Here’s how we can support you and your loved one:

Professional Medical Support

Our experienced medical team is equipped to handle the complex health issues associated with Trisomy 13, including heart defects, seizures, and breathing problems. Regular check-ups and treatments are part of our care routine, relieving the burden on you. Our medical staff includes doctors, nurses, and specialists who are dedicated to providing comprehensive care tailored to each resident’s needs.

Occupational Therapy Workshops

Our occupational therapy workshops encourage residents to achieve their highest potential. Our team works patiently to help residents in all aspects of life.  The workshops and vocational programs provide a wide variety of activities and tasks which are stimulating, and teaches our residents new skills, allowing them to grow as an individual. 

Emotional and Social Support

We create a nurturing environment where residents engage in social activities and form meaningful relationships, enhancing their emotional well-being. Our staff offers emotional support to help residents feel valued and understood. We organize various social activities, outings, and events to promote social interaction and emotional well-being.

Safe and Comfortable Environment

Sunfield Home Howick offers a safe, comfortable living environment. Our facilities are designed to accommodate the physical needs of our residents, ensuring a safe and comfortable living space and providing peace of mind for families. Our home is equipped with specialized equipment and modifications to ensure the safety and comfort of all residents.

Family Involvement

We believe that Sunfield is a home away from home, and we encourage family to continue to be involved with their loved ones. We also keep families up to date and involved through newsletters and events at Sunfield. Regular communication and involvement are key to providing holistic care and ensuring that families feel connected and informed.

 

Lifelong Learning and Development

Our programs encourage lifelong learning and development, helping residents explore new interests and skills at their own pace. We offer a variety of educational and recreational activities that cater to the interests and abilities of our residents. These programs are designed to promote cognitive stimulation, creativity, and personal growth.

Finding the Right Home for Your Loved One

Finding the right home for your loved one is a challenging and emotional task. You want to ensure they receive the best possible care in a safe, supportive environment. At Sunfield Home Howick, we understand these concerns deeply. Be sure to take a look at our blog for some stories of some of our Residents and Families about their experience at Sunfield.



Caring for a loved one with Trisomy 13 can be incredibly challenging, but you don’t have to do it alone. Sunfield Howick provides expert, compassionate care tailored to the unique needs of individuals with intellectual disabilities. Our comprehensive support ensures your loved one receives the best care, allowing you to focus on cherishing your time together.

Chat to Don

Have any questions? Call or email our General Manager, Don Tully.

gm@sunfield.co.za
082 801 5931