Andrew Brereton asked:


I personally experienced this situation twenty one years ago when a consultant paediatrician calmly announced that my son would suffer severe cerebral palsy for the rest of his life, before coolly ushering us out of his office. We travelled home and looked up the meaning of cerebral palsy in a medical dictionary! Now, you would use the internet, but should you have to? Why should you be treated in this way?

When one considers the devastation, which the deliverance of news such as this can cause, one would imagine parents would be informed as tactfully and discretely as possible. One would also hope parents would be informed together, in warm, hospitable surroundings and be given as much time as necessary to absorb the magnitude and complexity of the information. This certainly does not seem to be the experience of many parents and to this date, there are many research articles in the literature, which demonstrate the disclosure of such diagnosis by medical professionals to be an ongoing difficulty.

One mother related a particularly bad example of how the ‘news’ was broken to her when she explained to me;

“We were sitting in the paediatrician’s office and I asked his opinion of Ryan’s progress. He just sat there with a cold expression and said; - ‘I’m afraid Ryan is showing early signs of having cerebral palsy. I’ll see you in one month’s time.’ – With that we were asked to leave.”

Another mother described to me the way in which she was informed about her little girl’s problems.

“The best thing you can do is to take her home, keep her warm and comfortable and try to have a proper baby next time.”

Out of the myriad of parents to whom I have spoken down the past few years, only once have I ever met parents who were satisfied with the way in which this situation was handled. These assertions are supported by research, which demonstrates that only twenty percent of parents are satisfied with the way in which the news of their children’s problems was broken to them. It is possible to do this task properly though, as is proven by the study carried out by Nursey, (1991). She achieved a one hundred percent satisfaction rate in an experimental group of parents, who were informed of their children’s’ problems together, in private and in a direct, honest and sympathetic way and who were given immediate and easy access to support services.

A system, which leaves a delicate task as breaking such news, to people who are trained to be cold, calculating clinicians, when precisely the opposite traits are required, is seriously flawed. Would it not be more appropriate in such a situation to have someone available who is not such a ‘cool, calculating clinician,’ someone who is trained to deal with people on a more human level, who could deliver the news in a more tactful manner? The professional resource is certainly available to do this and utilising it would save parents from having to deal with the trauma of receiving such shocking news, delivered in such a dreadfully incompetent manner. Psychologists and other counselling professionals abound and are qualified to deal with every conceivable stressful situation. This professional resource should be tapped, with experienced professionals on hand to talk parents through this dreadfully sensitive situation and beyond. They should act as the parent’s ‘advocate’ with the medical profession and as such would be in a position to provide first hand information and support to new parents. They would be able to guide the family through the emotional minefield, which is to come.

Bringing such a system into the ‘front line’ instead of tolerating a situation where overwrought, confused parents have to find information and access to support services on their own would eradicate other difficulties. -



Many parents who are dissatisfied with the explanations and information concerning their child’s problems, given to them by the doctor (and there are many!), might be satisfied.





Input from various disciplines could be more accurately tailored to parental need.





Parents would be more expertly guided through the trauma of coming to accept their child’s problems, than they ever could be by someone whose training was purely clinical.



Will the medical profession heed these words? No! I predict that parents will still be voicing the same complaints in twenty years time.

Andrew Brereton



Milton

Glynis Shaw asked:


Cerebral palsy is most commonly the result of failure of a part of the brain to develop, either before birth or in early childhood. This is sometimes because of a blocked blood vessel, complications in labour, extreme prematurity or illness just after birth. Infections during pregnancy, or infancy and early childhood, eg meningitis or encephalitis, can also cause cp. Occasionally it is due to an inherited disorder; in such cases genetic counselling may be helpful.

The symptoms of cerebral palsy vary from child to child. Some children will have problems walking, while others will be profoundly disabled and require life-long care.

Cerebral palsy (cp) is not a disease or an illness. It is the description of a physical impairment that affects movement. The movement problems vary from barely noticeable to extremely severe. No two people with cp are the same; it is as individual as people themselves.

The main effect of cp is difficulty in movement. Many people with cp are hardly affected, others have problems walking, eating, swallowing, speaking or using their hands. Some people are unable to sit up without support and need constant enabling.

Sometimes the parts of the brain affected result in difficulties in vision, hearing, perception and learning. Between a quarter and a third of children and adolescents, and about a tenth of adults, are also affected by epilepsy.

People with cp often have difficulty controlling their movement and ****** expressions. This does not necessarily mean that their mental abilities are in any way impaired. Some are of higher than average intelligence, other people with cp have moderate or severe learning difficulties. Most, like most people without cp, are of average intelligence.

Improvements in maternity services and neonatal care have meant that fewer babies develop cp as a result of lack of oxygen (from difficulties at birth) or jaundice, but they have also meant that more babies with very low birth weights survive. These babies are more likely to have cp.

There are several different common types of cerebral palsy, each of which has different symptoms. These are explained below.

Spastic hemiplegia

If your child has spastic hemiplegia, they will have muscle stiffness (spasticity) on one side of their body. This is normally limited to the hand and arm, but sometimes also affects their leg.

Spastic hemiplegia may also cause your child to develop an abnormal curvature of their spine (scoliosis). They may have problems speaking, but their intelligence should not be affected by the condition.

Some children with spastic hemiplegia will also experience epileptic seizures.

Spastic diplegia

In this type of cerebral palsy, your child will experience muscle stiffness in their legs. This may cause difficulty walking, and they may need aids such as leg braces or a walking frame.

Communication skills and intelligence should be unaffected.

Ataxic cerebral palsy

In this form of the condition your child’s balance and depth perception will be affected (depth perception is the ability to judge where objects are in relation to your position).

They may appear clumsy and uncoordinated and have problems with activities that require precise movement, such as writing or tying a shoelace. They may also experience tremors in their hands (involuntary shaking), especially when they are trying to reach for an object.

Your child’s communication skills and intelligence should be unaffected, though their speech may be erratic.

Athetoid or dyskinetic cerebral palsy

If your child has athetoid cerebral palsy (also referred to as dyskinetic cerebral palsy) they will experience both increased and decreased muscle tone. This means they frequently make apparently random and uncontrolled body movements. They will probably have problems with maintaining their posture.

Their speech will also be affected as they have difficulties controlling their tongue and vocal cords. Your child may also have problems with eating and drooling.

Intelligence is normally not affected in children with athetoid cerebral palsy.

Spastic quadriplegia

This is the most severe type of cerebral palsy, caused by extensive damage to the brain. Your child will have a high degree of stiffness in all their limbs, and may be unable to walk. Conversely, their neck muscles will be very lose and they may have problems supporting their head.

They will have difficulties in speaking, and the condition is also associated with a moderate to severe degree of learning difficulties.

Frequent epileptic seizures are common in children living with this condition.



Monica