Hydrocephalus: parents under pressure


Jan Tippett provides five top tips for supporting a child’s pre-school development at home

Hydrocephalussounds like an uncommon neurological condition but as many as one in every 750 children have some form of this brain condition. Hydrocephalus is the most common reason for children to have a brain operation in the UK.

Hydrocephalus occurs when too much cerebral spinal fluid (CSF) creates excessive pressure inside the brain, which can be congenital or due to a neonatal or acquired brain injury, some types of spina bifida or an infection like meningitis. Ever since the first successful procedures during the 1950s to reduce the accumulation of CSF within the brain with the invention of valve and shunt systems, our understanding of the causes of hydrocephalus, its treatments and effects has increased.

When parents first receive a diagnosis of hydrocephalus for their child, they have to absorb so much medical information about treatments and procedures. Discharge from hospital and the return to family life is stressful, as parents monitor their child’s health, looking for signs that would indicate a shunt malfunction, like headaches, excessive vomiting, eyesight problems or sleepiness.

Parents also have concerns about the effects of hydrocephalus on their child’s progress, such as difficulties with memory, concentration, sensory processing, problem-solving, spatial awareness and even the possibility of visual impairment.

Unsurprisingly, there is huge variation in the degree to which some babies and small children are affected by hydrocephalus and the challenges they experience. Some children have very few or no discernible effects of hydrocephalus on their development, whereas other children may experience challenges throughout their lives.

Families are under pressure to learn about medical treatments and the effects of hydrocephalus in such a short time that some say they lose sight of the fact that their new born is “just a baby”, needing what every baby needs to thrive.

By following these five top tips for a nurturing environment in the home during the early years, using the positive impact of neural plasticity on brain development, parents can relieve some of the possible effects of hydrocephalus.

1. Talking and reading
Verbal communication is vital when caring for and playing with a baby. Babies respond to sound and language experts believe that all humans are born with the innate capacity to communicate, even if they have a sensory impairment. Babies with hydrocephalus may need more language experiences in order to overcome their condition and to communicate effectively.

Fortunately, learning language is a strength that many children with hydrocephalus have. Names of real objects and people are relatively easy to remember and the fact that they can see, touch and play with objects makes naming their world fun. Children with hydrocephalus often learn by rote easily, so incorporating speech and songs into a child’s daily routine will stimulate their language development.

Learning language and learning concepts go hand-in-hand so creating a language-rich environment is important. When learning abstract meanings of words or concepts children with hydrocephalus can sometimes have difficulties. Hands-on experience is an excellent way to teach difficult concepts like “next to”. Giving instructions like “Put the teddy next to the chair” during play sessions and modelling the activity helps a baby to understand. A child with hydrocephalus needs to be taught some concepts explicitly, rather than expecting them to simply “get” the concept eventually.

Reading and sharing books from an early age is important for orientating a small child around a book so their eyes focus on pictures, then track and follow a sequence. Sharing books together and asking questions about the pictures creates links with concepts, such as “up/down” and difficult ones like “being kind”. Screen time should be avoided during the first year for babies with hydrocephalus because a moving image can be too busy for them to process.

Babies should experience playing in different positions, such as on the floor.

2. Moving and learning
Experiencing various positions
It is important for all babies to experience different positions for play, such as on the floor, on their tummy or on a parent’s knee. Babies, especially if they have additional needs, should experience the world from more than just a sitting position.

Bouncing cradles, car seats and high chairs put babies in the same seated position for most of the day so it is vital that babies move around freely as much as possible. Babies with hydrocephalus may be put in seated positions for long periods due to parental concerns about head control, lack of mobility or worries following repeated hospital admissions.

Having body awareness is proprioception, which is important for learning gross motor skills and hand skills, as well as establishing depth perception, sometimes a difficulty for children with hydrocephalus. Proprioception is rather like a baby’s GPS system, telling them where their body is in space, giving information on the speed and force of a movement. Babies are learning how to control their bodies while moving and playing.

Vestibular system
Moving also helps to develop a baby’s vestibular system, telling them about their head position so they know which way is up and have a sense of balance. It has a vital role in allowing children to move safely, pay attention, sit still and maintain an appropriate level of alertness for daily play activities.

Independent mobility is an important factor in a child’s physical, cognitive, sensory, emotional and social development. Babies should be actively exploring their environment by 12 months. If a baby has additional needs, being encouraged to move independently and interact with their world can keep the effects of their neurological condition to a minimum.

As a child grows up, their understanding of their own body is important for independent self-care. Knowing how to feed yourself, dress and clean your teeth require an understanding of how to control your body in the right direction, with the perfect pace and force.

Throughout this exciting time for learning a physiotherapist and occupational therapist can advise on strategies to encourage a child to move, explore and learn.

A child may need to be show repeatedly how to play with a shape sorter toy.

3. Playing
Learning to learn
Like all children, babies with hydrocephalus need to develop, learn and practise skills through play experience and the stimulation of their senses: sight, touch, hearing, taste, smell and movement. It is through play that small children learn how to learn, so they can build up the skills needed for independent life. The important abilities learnt in the early years are transferable skills for use throughout the rest of a person’s life.

When a child has additional needs, the time to play can be difficult to find. Play is often squashed between hospital appointments and medical treatment but play is important for a child’s cognitive development. Play nourishes every aspect of development and forms the foundation of linguistic, cognitive, physical, sensory, social and emotional skills that are vital for life.

Children with hydrocephalus may take longer to learn how to play, due to issues around initiating and deciding. A child may not “just play”, they may need more encouragement to engage in play than one unaffected by the condition.

Modelling play
Parents and carers are advised to play alongside their child and to model the type of play that they would expect when playing with toys. If a child has a shape sorter toy, they will need to be shown repeatedly how to play with the components, receiving praise whenever they are successful.

Concepts can take a while for a child with hydrocephalus to grasp. Playing with toys to show what happens when an action takes place, and drawing a young child’s attention to it, can help with concept learning. For instance, when playing with a toy car on a ramp role-play ask, “what would happen if it went too fast?”

Talking through activities will give a child a language model and a physical model of how to play. Talking while enjoying play experiences teaches complex concepts so a child with hydrocephalus can learn and thrive.

4. Choosing challenging toys
Aiding memoryPop-up toys, demanding “cause and effect play”, are good for prospective memory, which is often described as “remembering to remember”. Predicting or anticipating games like peek-a-boo and Round and Round the Garden rhymes are all helpful for children with hydrocephalus, who often have difficulty with prospective memory.

Some children can be passive in their play where they don’t initiate, partly because they don’t anticipate anything will happen. Opportunities to experience toys that enhance their prospective memory are very useful.

Spatial skills
Putting out all the toys a child has should be avoided. Instead, have a routine of different types of play, using a range of toys. Toys that develop spatial skills are important for children with hydrocephalus, who need experience of handling, investigating and building with a range of objects.

Avoid gender stereotyping
Traditional “girls” and “boys” toys can lead to children missing out on types of play which can enable them to overcome some difficulties associated with hydrocephalus. Girls often miss out on construction-type play, which can hinder their developing spatial, 3D planning and early maths skills.

Boys can miss out on imaginative play through having little experience of play house games with teddies, dolls or action figures. Boys benefit from play involving daily routine and caregiving, which helps with sequencing and being aware of the feelings of others.

5. Keeping to a daily routine
Sometimes, due to health difficulties or time spent in hospital, a child’s daily routine does not always match the rest of their family. It is wise to continue to create astructure to the day and to the week, in which a growing child can feel safe and knows what is going to happen next. Talking with a child, who has hydrocephalus, about plans for the day or the week will help them to be aware of sequences of events and be more accepting of change.

Visual support
Visual timetables and support structures help with understanding the passage of time, which can be a difficult concept for some children with hydrocephalus. A visual timetable that a child can interact with and talk about builds a safe and positive routine into their life. Visual supports, containing pictures, help with understanding that symbols have meanings and provide opportunities to practise early “reading” of signs. Children who have hydrocephalus need to learn to make choices, initiate and structure their lives in ways that follow a meaningful sequence in order to learn vital life skills.

Seek support
If parents are under pressure and have any concerns about their child’s development, they should talk to their health visitor or GP, who can offer advice or refer to child development services.

Further information
Jan Tippett is the national Education Officer for the Shine charity and previously was a teacher in mainstream schools before working with charities supporting families with children who have neurological conditions. Jan is also a parent of someone with hydrocephalus.

A new edition on Shine’s publication Your Child and Hydrocephalus is due later this year:


Jan Tippett
Author: Jan Tippett

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