5.1  Children with complex needs

What do we mean by describing children as having complex needs? Before we answer that question, it may be helpful to consider the reasons that children may have complex medical needs.

Babies and children can have complex medical needs for any of the following reasons:

• Genetic conditions, meaning an inherited condition from one or both parents. Such conditions include cystic fibrosis, Down’s syndrome and sickle-cell anaemia.

• Congenital conditions, that is, conditions present at birth. They can be genetic conditions (as described above) or could be caused by an interruption to the growth and/or development of the embryo (up to the first three months of pregnancy) or foetus (from the third month of pregnancy). An example of a congenital birth condition caused by interruption to growth and development is spina bifida.

• Birth trauma – a lack of oxygen to the brain during birth, for example, can lead to brain damage and cerebral palsy.

• Injuries and trauma can cause damage to the brain or body that can result in the child developing complex medical needs.

• Treatment for life-threatening conditions, which are conditions that require surgery, or ongoing medical conditions that can mean that a child will have complex medical needs. Examples of such conditions include cancer treatment or kidney failure that requires dialysis or a kidney transplant.

Figure 5.2  Child with cerebral palsy receiving physiotherapy

The number of children with complex medical needs is increasing. There are many reasons for this, including:

• improvements in antenatal care for mother and babies (Blair et al., 2010)
• increased survival rates of babies born early – the average length of pregnancy is 40 weeks, however 60 per cent of babies survive at 24 weeks of pregnancy (Tommy’s, 2019)
• improvements in surgery or medicine, including treatments for cancer (Blair et al., 2010)
• improvements in health professionals’ knowledge of treatment and management of complex cases (Blair et al., 2010)

These reasons explain why babies and children are surviving when previously they may not have. As such, this has led to an increase in the number of children with disabilities, some of which result in the child having complex medical needs.