Respite Care for Children: Our Guide

Congenital heart defects affect 1 in every 100 newborn babies in the UK, making CHD the Number One birth defect. A staggering 12-15 babies are born each day with CHD. A small number of babies are born with complex congenital heart defects that require special medical care soon after birth.

A baby’s heart begins to develop shortly after conception. During development, structural defects can occur, affecting the walls and valves of the heart, and the arteries and veins that surround it. These defects can disrupt the normal flow of blood through the heart, causing it to slow down, go in the wrong direction or to the wrong place, or be blocked completely.

Treatment includes medicines, surgery and even heart transplants, and depends upon the type and severity of the defect and the child’s age, size and general health. Today, many children born with complex heart defects go on to lead full and happy lives.

Feeding difficulties can often be extremely stressful and under supported. A feeding difficult can be defined as:

1. variety of feeding or mealtime behaviours perceived as problematic for a child or family
2. children with oral motor difficulties in ingesting & swallowing foods and or fluids. This may be combined with other difficult mealtime behaviours.

The following are some causes of feeding and swallowing disorders in children:

• nervous system disorders (e.g., cerebral palsy, meningitis, encephalopathy)
• gastrointestinal conditions (e.g., reflux, “short gut” syndrome)
• prematurity and/or low birth weight
• heart disease
• cleft lip and/or palate
• conditions affecting the airway
• autism
• head and neck abnormalities
• muscle weakness in the face and neck
• multiple medical problems
• respiratory difficulties
• medications that may cause lethargy or decreased appetite
• problems with parent-child interactions at meal times

Lagan’s Foundation is a specialist provider of respite care for families of children with complex feeding difficulties which often result in tube feeding.