Cerebral Palsy: what to expect.
Living with cerebral palsy
Learning to live with Cerebral Palsy.
Cerebral Palsy (CP) is a group of movement disorders that appear in early childhood, caused by a brain injury that develops before, during, or soon after birth. The symptoms of CP can vary greatly in each child but mainly affect mobility. For example, some children may find walking difficult, affecting their daily life. Therefore, it is important to support motor development as early as possible with mobility aids. Read on to find out how CP can affect children and how you can support your child's development in a targeted manner.
Getting the diagnosis was a shock. But we quickly decided to make the best of it. We want Justus to get the best support and lead a happy life.
Nicola, Justus’ mother
Supporting a child with Cerebral Palsy as a family.
To many parents, the initial diagnosis of cerebral palsy can be a shock. You will no doubt have questions about your child's future: What effect will Cerebral Palsy have on the development of my child? What can we do so our child can live an active and independent life? How will our family life change as a result?
After the initial diagnosis and consultation with a specialist, it will become clear there are many ways to support the development of your child with CP. You, as a family, will usually receive support from specialists in various fields who will work together to create a therapy plan to treat both existing and developing symptoms. To achieve this, therapies such as physiotherapy, occupational therapy, and neuromobility aids such as orthotics are available.
What is Cerebral Palsy?
Cerebral Palsy (CP) is defined as an injury to the brain that occurs before, during, or shortly after birth due to a variety of causes. It is usually accompanied by a number of movements and postural dysfunctions, which often limit mobility. In addition to these motor dysfunctions, other impairments may occur, such as disorders that affect communication or behaviour.
What are the causes of Cerebral Palsy?
Finding out the exact cause behind CP in an individual child or determining the risk factors that may have played a role is often challenging for doctors. It is often not possible to determine what caused Cerebral Palsy, and there may have been several factors involved.
The causes of Cerebral Palsy in children are very diverse. Doctors usually classify the causes according to the time at which children acquire the brain injury:
Before birth (prenatal): more than 50 percent of children are affected during pregnancy, usually as a result of infection or lack of oxygen, for example when a blood clot (thrombosis) forms in a blood vessel in the brain and obstructs blood flow.
During birth (perinatal): for example as a result of lack of oxygen during birth due to complications.
After birth (postnatal): this can occur due to an infection such as meningitis
In addition, there are a number of factors that may increase the risk of developing Cerebral Palsy in children. Some of these factors are:
Premature birth: Children born before 32 weeks are more likely to be affected by Cerebral Palsy.
Birth complications
A birth weight that is too high or too low
Maternal obesity during pregnancy
Infectious diseases such as toxoplasmosis or rubella, or those caused by cytomegalovirus or herpes simplex virus before or after birth
How will Cerebral Palsy affect my child's development?
Depending on the severity of the resulting brain injury, different symptoms of cerebral palsy may appear. As Cerebral Palsy is a group of movement disorders, it mostly affects motor skills or mobility. In addition, there may be other accompanying symptoms such as pain or cognitive impairments. The symptoms of each child depend on the area of the brain that is affected, so not every child will experience the same symptoms or the same severity. The following signs of Cerebral Palsy occur alone or in combination.
Based on the individual symptoms, doctors can distinguish between different types or classifications of Cerebral Palsy. The following overview shows the form of Cerebral Palsy behind the medical terms.
What does the GMFCS level say about my child's mobility?
Based on the results of an examination of motor skills and mobility in everyday life, doctors can diagnose the level of severity of cerebral palsy. The “Gross Motor Function Classification System” (GMFCS) is often used for this purpose – not only by doctors but also by members of other professional groups, such as physiotherapists and occupational therapists. In many cases, you as parents are actively involved in this process: Questionnaires are used to include your perspective, which makes it easier to identify everyday problems and observations. The GMFCS consists of five levels or stages, into which mildly to severely affected children with cerebral palsy can be classified.
Determining the GMFCS level is about recording your child's current level of mobility – in other words, which movements are possible for your child in everyday life and where he or she encounters obstacles or difficulties. Each level refers to the movements that are possible. Since the ability to move depends on the age of your child, the GMFCS also distinguishes between different age levels (from 0–2, 2–4, 4–6, 6–12, and 12–18 years). Below you can find a general summary across all ages.
GMFCS 1
Your child can move around independently (with or without an orthosis, such as an arm or leg splint). Mobility is hardly restricted, and depending on age, activities such as walking, climbing stairs without using hands for support, running, and jumping are possible. Participating in sports is also possible in later childhood (6-12 years). At this age, speed, coordination, or balance restrictions may become apparent.
Each sibling has supported Justus in his progress. He has become more independent and learned new things he would not have experienced on his own.
Nicola, Justus’ mother
Living as a family with Cerebral Palsy.
Treatments become part of everyday life
If your child is diagnosed with cerebral palsy, it can affect your entire family life. Specialist therapies and facilities, trained health professionals as well as orthotic devices and specialist equipment can become part of your everyday life. The extent to which changes occur will depend on your child's mobility level and the amount of support they require.
Improving the mobility of children with Cerebral Palsy.
Treatment of Cerebral Palsy will depend on your child's symptoms and how they affect their daily life. The goal of physical therapy is to improve motor skills, and regular appointments are used to keep track of how mobile your child is and how they are developing. This will help health professionals to provide the best possible support and treatment plan for your child. Preventive measures also play a major role to prevent muscle, shortening, and contractures as well as malpositions in the first place.
Many different specialists will work together to promote the mobility of your child with Cerebral Palsy. Planning the necessary therapeutic measures is, however, mainly the responsibility of the treating doctor. For movement therapy, your child is primarily cared for by Physiotherapists, Occupational Therapists, and Orthotists. Speech and Language Therapists may also be part of the treatment team to provide support in achieving the best outcomes and quality of life for your child and your family.
Once Justus was wearing the Exopulse Mollii Suit, his dexterity improved. It became much easier for him to use his fork.
Nicola, Justus‘ mother
What mobility aids and orthotic devices are available?
From orthotics to walkers and wheelchairs, to a near full-body neuromodulation suit, there are numerous mobility aids available for children with Cerebral Palsy. The neuromobility portfolio offers a selection of orthotic devices and mobility aids Ottobock offers for children, adolescents and adults with CP.
L300 Go | Functional Electrical Stimulation
What does Cerebral Palsy mean for your child's future mobility?
Many parents of children with Cerebral Palsy often feel uncertain about their child's future. Questions about how the physical impairments will affect development, and therefore the prospect of independence and active life, are often the primary focus. Although CP cannot be cured, maintaining and improving mobility are the goals of treatment, and specific support can improve mobility. More than half of the children with Cerebral Palsy are able to walk independently, with or without the use of an orthotic device.
Your child’s independence.
In addition, the clinical presentation of Cerebral Palsy is widely variable depending on the extent of the injury to your child's brain. As a result, some children only have very slight limitations, and having an independent life is indeed possible. If the CP is severe, it is possible that those affected will be dependent on support for the rest of their lives. However, even in these cases, there are many mobility aids to promote and shape your child's independence and participation.
Where can parents of children with cerebral palsy find support?
Your pediatrician is your first point of contact, and later usually orthotists and caregivers from the fields of physiotherapy, occupational therapy and speech therapy are also at your side if you need advice.
In addition to discussing cerebral palsy within your own family and circle of friends, networking with other parents in a similar situation can be helpful. Here you can exchange experiences about your baby or child with cerebral palsy and discuss certain therapies.