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Cerebral Palsy : A Parents Dilemma

Cerebral Palsy : A Parents Dilemma

Dr. Gaurav Jain in Indore
Dr. Gaurav Jain

Pediatric Orthopedic Surgeon, Indore

13, Jan 2022
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Cerebral palsy is one of the most common movement disorders in kids. It occurs in every 3 out of 1000 live births. In severe forms, the management is maintaining posture so as to help nursing hygiene but in mild cases, with the advent of new surgical procedures, kids can live “Near Normal” lives. 
 Cerebral Palsy: 
Causes Cerebral palsy is caused by any insult to the developing brain i.e from womb to age of 2 yrs, caused by anything such as infection during pregnancy to mother, difficult delivery (using suction or forceps), birth trauma, oxygen deficiency during or after birth, trauma, neonatal seizures etc. 
How Can I know my kid has Cerebral Palsy? 
Your kid will rarely show symptoms of cerebral palsy immediately after birth. The suspicion arises when during its infancy, it is unable to perform specific activities, which it is supposed to do. In other words, your kid is behind the other kids of their age in terms of various “Developmental milestones”. 

What do parents face when they come to know about their kid’s condition? 
It’s very hard for parents to accept the fact that there is something wrong with their kids. They often posed various social-psychological challenges. Because every kid is a “precious baby” these days, the diagnosis of their kin is like a bolt from the blue to the majority of patients' parents. 

 Step 1: Learn more about the condition and its treatment modalities 
The key to proceeding in such a situation is to understand various facts about the condition. Especially in developing countries, this condition is neglected both by parents and health care professionals. 
Parents must understand that the root cause of this condition is a defect in the brain. This defect is going to remain “as it is” throughout the kid's life. 
Though many clinical trials are ongoing for medical treatment, either they are incomplete or suggest grim results. So practically speaking, we don’t have a scientifically proven treatment for the injured brain so far. 
So it’s always in the right interest to accept the fact as early as possible, for a parent. All that a healthcare professional does is provide support to muscles and bones so that the condition doesn’t deteriorate.
 
 Key 2: Become your child’s physiotherapist. 
Because of the brain defect, the centre of the brain that controls balance and movement is usually affected. This causes excessive contractility I.e muscle will naturally prefer to be in a contracted state. To relieve such a problem, we need to stretch the affected muscle, in order to avoid complete contracture I.e when muscle no longer is in the state that it can further be stretched. Due to this, the joint will undergo stiffness. Broadly speaking, the whole management of cerebral palsy is based on one key factor is to maintain the length of the affected muscle. 
The most effective way to do these exercises I.e Physiotherapy. 
In a developing country where earning capacity is very low, the expense of physiotherapy poses an enormous burden on the family. Actually, this is the main cause of the condition being so neglected. 
A proper solution to this will be “a combined effort” both by physiotherapists and parents. Parents must give full attention to the exercises that are being performed on their kids by the physiotherapist, and must try to replicate those exercises, multiple times at home. 
This will reduce their dependence on physiotherapists. Secondly, during various lockdowns, we have seen even well to do family kids deteriorating. This approach will help families in multiple ways that are reducing economical burden, physiotherapist bonding, proper emotional bonding, and a sense of responsibility (in a totally different manner than the normal parent). 
A word of caution, parents must be regular with physiotherapists, the intervals of visit can only be reduced by this approach. Parents can never try to replace a physiotherapist from the treatment team. 

 Key 3: Reduce expectations from healthcare professionals and kids. 
In today’s competitive world, every parent loads their kids with unrealistic expectations. From treating doctors and other team members, parents tend to expect miraculous results. They must understand that it’s sort of a lost battle, we are fighting. We are managing to prevent more damage, and strengthen what has remained off the disaster. Rather than feeling depressed with kids unable to do things, we must divert our thoughts towards enjoying and feeling fortunate with what the kid is doing. For a developing country, a proper counsellor is always required but unfortunately, the system lacks one, and so the optimal support to such parents is lagging. 

 Key 4: Nutrition Because of poor muscle control and coordination, kids tend to have weaker bones. 
We frequently come across fractures in such patients. Secondly, it’s the neglect (in developing countries) that makes bones susceptible to fractures. Parents must ensure proper nutrition, especially protein, calcium and vitamin D3 intake of the kids.

  Key 5: Learn from each other 
Through various support/social groups for cerebral palsy parents are common in developed countries, developing countries find it hard to have one. In this situation, doctors and physiotherapists play a bigger role so that parents of such parents can be brought together and they themselves try to figure out a various day to day problems with kids. They can learn from each other. We have seen parents coming up with brilliant ideas when they work in unison. They can also learn from the operated patients, post-operative rehabilitation and complications better when they see their peers doing. 

 Key 6: Keep kids engaged 
Parents must inculcate a habit of spending more and more time with kids and this becomes more important for cerebral palsy parents. They must make kids active all the time, either by activities, developing hobbies, playing with them, swimming, reading books for them, enhancing their knowledge about the world by various field trips to museums, zoos, temples or other pilgrimages, historical places etc.        
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