What is Hypoplastic Left Heart Syndrome
Hypoplastic Left Heart Syndrome (HLHS) is a rare congenital heart defect where the left side of the heart is underdeveloped. This affects the heart's ability to pump oxygen-rich blood to the rest of the body. Symptoms include blue-tinted skin, difficulty breathing, and poor feeding. HLHS is often diagnosed before birth or shortly after. Treatment normally pivots on 3 surgeries or a heart transplant to help the child grow.
How HLHS Impacts a Family
HLHS profoundly impacts both the baby and the family. Babies with HLHS face frequent hospital admissions, difficulty feeding and gaining weight, and often require multiple complex surgeries which can damage their voice due to the proximity of the voicebox nerves to the heart. With each surgery comes risk, while avoiding surgery is almost certainly fatal. The constant care and uncertainty about baby’s survival cause significant stress for parents, who must juggle their time between hospital visits, caring for other children, and work. All of these demands can disrupt routine life, affect siblings' education, and put pressure on the family. The financial and emotional burden of HLHS need support and require resilience. But this doesn’t have to be faced alone.
(or at least, my family!)
EACH provides invaluable support to families facing the challenges of caring for a child with life-threatening conditions.
For a brief overview of what they do:
Services
Specialized Medical Care: Ensuring children receive the best possible treatment.
Emotional Support: Offering counseling and guidance to families.
Respite Care: Allowing families to take a break and recentre
Creating a Comforting Environment
Palliative Care and Pain Management: Focused on maximising quality of life.
Therapeutic Activities: Engaging children in activities that bring joy and comfort
Supporting the Whole Family
Counseling for Parents and Siblings: Managing emotional and logistical burdens in ways that match the family
Practical Assistance: Providing hands-on support to ease daily challenges.
Holistic Approach
EACH provides comprehensive care that gives families the support they need to face the challenges of children with life-threatening diagnosis.
For our family, this has meant play sessions, practical and honest advice about what to expect and how to cope, and a space to feel normal while faced with extraordinary uncertainty. Baby J’s siblings have experienced days away to take pressure off their parents while they meet other kids. Mum and Dad have been given support at every step of Baby J’s diagnosis.
EACH relies on your support to continue providing vital services to children with life-threatening conditions and their families. Donations help fund essential care, emotional support, and respite services.
This means specialised equipment, such as play facilities and therapeutic tools for disabled children, expert care from staff for children and their families, and activities to help build normal childhoods around life changing diagnosis.
By donating, you help EACH create a comforting environment where families find relief and strength, directly impacting their quality of life. Your generosity ensures that EACH can sustain and expand its crucial support for those who need it most.