Raising a Child with Sickle Cell Disorder

Supporting Your Child from Birth to Adulthood

Raising a child with Sickle Cell Disorder (SCD) presents unique challenges, but with the right knowledge, support, and resources, parents can help their child lead a fulfilling and healthy life. From infancy through adulthood and beyond, your role as a parent or caregiver is crucial in managing their health, ensuring they receive appropriate medical care, and advocating for their needs in education, healthcare, and daily life.

Early Years: Managing an Infant with Sickle Cell

A diagnosis of SCD at birth can be overwhelming for parents. However, early intervention and proper care can significantly improve a child’s quality of life. Key areas to focus on in the early years include:

Newborn Screening and Early Treatment: Most babies are diagnosed through newborn screening programmes. Early diagnosis allows for immediate preventive care, including daily antibiotics (such as penicillin or erythromycin) to reduce infection risks and vaccinations such as the pneumococcal vaccine.

Recognising Early Symptoms: Swelling in the hands and feet, frequent infections, and episodes of pain can occur in infancy. Regular monitoring and early treatment are essential.

Hydration and Nutrition: Keeping your child well-hydrated and ensuring they eat a balanced diet can help reduce the risk of pain episodes.

Medical Appointments and Follow-ups: Regular check-ups with a haematologist are important to monitor their health and manage any complications.

Growing Up: School, Social Life, and Advocacy

As children grow, they start to engage with the wider world. Parents play a vital role in ensuring that their child’s school and social environments are supportive and accommodating.

School Advocacy:

Inform teachers and school staff about SCD and its implications. Provide a healthcare plan outlining what to do in case of pain episodes or fatigue.

Ensure the school understands the need for breaks, hydration, and temperature regulation to prevent crises.

Request an Individual Healthcare Plan (IHP) or, in some cases, an Education, Health, and Care Plan (EHCP) for additional support.

You can find more information of Supporting young people with sickle cell at school at the sicklecellsociety.org

Managing Social and Emotional Well-being:

Encourage open conversations about SCD with your child and their peers to promote understanding.

Support their participation in activities while ensuring they recognise their limits to avoid overexertion.

Look out for signs of emotional distress, as children with SCD may feel isolated or different from their peers.

Supporting Your Child Through Medical Appointments and Hospital Stays

Children with SCD may require frequent hospital visits, either for routine check-ups or emergency care. Parents can help make these experiences less stressful by:

Keeping a Medical History Record: Maintain a file with details of previous hospital visits, treatments, and medications to ensure continuity of care.

Advocating in the Hospital Setting: Ensure that doctors and nurses understand your child’s specific needs and pain management requirements.

Providing Emotional Support: Hospital stays can be stressful, especially for younger children. Bringing familiar items from home, staying by their side, and explaining medical procedures in an age-appropriate way can help ease their anxiety.

Transitioning to the Adult Ward: Preparing for Independence

One of the most critical milestones in caring for a child with Sickle Cell Disorder is transitioning from paediatric to adult healthcare services. This typically occurs between ages 16 and 18 and requires careful preparation.

Gradual Introduction to Self-Management: Help your child understand their condition, including medication adherence, recognising symptoms, and seeking medical help independently.

Involvement in Appointments: Encourage them to take an active role in their medical discussions to build confidence in managing their care.

Understanding the Differences in Adult Care: Adult healthcare services operate differently, with less parental involvement. Work with the healthcare team to ensure a smooth transition.

Close Communication During Hospital Stays: Keep open communication with your child while they are in the hospital. Encourage them to share any concerns or discomfort they experience so they feel empowered to speak up about their care.

Encouraging Self-Advocacy: Reassure your child that they have the right to express their needs and concerns, whether it’s about pain management, medical decisions, or hospital routines. Let them know they will be supported regardless of whether a parent or carer is present.

Support After Transitioning: Encourage your child to maintain contact with you, their carer, or their sickle cell specialist centre if they experience any complications or uncertainties after moving to the adult ward. Reassure them that they are not alone and can always reach out for guidance and support.

Benefits and Financial Support

Caring for a child with SCD can have financial implications. Parents may be eligible for benefits such as:

Disability Living Allowance (DLA): Financial support for children under 16 with additional care needs (gov.uk).

Personal Independence Payment (PIP): For individuals over 16 who require support (gov.uk).

Carer’s Allowance: If you spend at least 35 hours a week caring for a child or adult with SCD (gov.uk).

Blue Badge Scheme: Provides parking benefits for individuals with mobility difficulties (gov.uk).

Preparing for Adulthood and Long-Term Well-being

As your child becomes an adult, they will need to manage their condition independently while navigating education, employment, and relationships.

Higher Education and Workplace Advocacy: Ensure they understand their rights regarding accommodations in university or the workplace.

Mental and Emotional Well-being: Encourage them to seek support when needed, whether through counselling, peer support groups, or healthcare professionals.

Regular Medical Care: Even as they gain independence, maintaining routine check-ups and following their treatment plan remains crucial.

Join Our Support Group: Raising a Child with Sickle Cell

Parenting a child with SCD can feel overwhelming at times, but you are not alone. Joining a support group allows you to connect with other parents, share experiences, and access valuable information as well as be part of a growing supportive community.

Contact Us for Support

Raising a child with Sickle Cell Disorder can be challenging, but you are not alone. If you have any questions about managing your child’s condition, advocating for them in school or healthcare settings, or accessing available support, we are here to help.

Whether you need guidance on symptoms, transitioning to adult care, financial support, or general advice, our team is committed to providing the information and assistance you need.

Please note: As a growing organisation, our response times may vary, but we will always get back to you as soon as we can. We appreciate your patience and look forward to supporting you.