Nachiket Patwardhan
Nachiket Patwardhan

Nachiket's History

Nachiket was born on October 17, 2003 at Ratnagiri, Maharashtra. He is a premature baby by 36 days. His weight was 2.25 kg at birth. It was a normal delivery. He cried at the moment he was born. He suffered from jaundice on third day of his birth and it got to his brain. He had an head circumference of 33 cms and had hydrocephaly.  On fifth day, his bilirubin level became 25 and it rose to 38 by the time he was shifted to another hospital at Dervan (Near Chiplun). There he was treated with phototherapy and his bilirubin lowered down to 18 on fourth day. For three days doctors did not speak anything. On fourth day doctors informed that he was out of danger. He was in NICU for total 17 days. While discharging from hospital doctor clearly informed us that since his jaundice had reached his brain (kernicterus), he wouldn't be able to talk or walk in his whole lifetime. He will be always bedridden. There are also good chances that he might not be able to see, listen and may remain mentally retarded.

We were heartbroken and depressed at this statement of the doctors.  The whole environment of the house became sad. For first four months he used to sleep only on right side. He could not move beyond that or lie straight. We only used to know that he is awake by seeing that his eyes are open. He was not doing even a single movement. He used to only feel the touch of his mother. He used to take complete one hour for milk feeding. For first one year we just roamed from one doctor to another doctor. We consulted all types of neurologist, psychotherapist, psychiatrist, Ayurvedicphysician  etc.  For first seven months he was treated with Gardinal medicine but he had never actually got epilepsy attack any time, so one of the neurologists asked us to stop the medicine.  We had started with physiotherapy at Ratnagiri itself, but it had all passive exercises and not much improvement could be seen.

Nachiket had very low immunity and would come up with some or other illness almost daily.  Due to this we could hardly maintain any relations with our neighbors or even relatives.  He would catch cold even if anyone in the family had cold.  We completely lost our interest in outings, going to hotel, shopping, going to family functions etc. everybody used to enquire about our child and we used to feel bad and we literally started avoiding even family functions. We used to feel bad seeing at other growing children of same age and feel why our child cannot walk. If he would have been healthy, he would have also played with other children. Initially we used to avoid travelling along with him by bus or train. People's sight, questions used to hurt us a lot. People also used to give us suggestions. We used to somehow manage to answer them but after reaching home, we used to become very depressed.  No choice for food was left; whatever was available we used to eat. No interest was left in shopping new clothes or crockery.  Everybody was frustrated. Everybody started working mechanically. Nobody used to sleep properly at nights due to which in daytime we used to feel sleepy. We did not even realize lunch time as we never used to feel like eating. This started affecting everybody's health. The situation was at its worst. It was like we were just passing by every coming day; we were not living the day!!!  From birth itself he used to vomit within half an hour after having milk frequently; at least 12-15 times a day. He was also having constipation and many a times did not pass stools even after two days, and if he passed stools at all it would be too hard that he used to bleed. After giving him the medicine to stop vomiting, he used to suffer from dysentery. He used to get fever at least twice in a week reaching almost 102 to 103 degrees. He also used to get episodes of cough right from age of 2-3 months. Minor change in environment and his cough used to get worst resulting in bronchitis. It was so bad that the doctors told us to change our house as it was located in an area surrounded by trees and the climate was very cool there. So we shifted to another house. The room was almost kept closed to minimize the effect of air.  He also used to catch infection very easily. He used to get infected by cold and fever immediately if any of the family members suffered from cold and fever. Due to this reason, any family member suffering from cold and fever would go to another house to avoid spreading infection to him.  Nachiket used to roll round and round when he was of seven months. He did strange leg movements and the head used to remain at same place without any movement.  His head was so large that we never bought him a cap of his age, what a child wears; we used to buy him a cap of his father’s size as this would fit him perfectly.  Because of hydrocephaly he could not move his head as it had lot of weight. Due to this reason, he used to have hair loss from back side of his head as there was friction constantly between that side of head and the ground surface. When he was of 10 months he started to roll over from left side. He usually got hurt on his head during this process as he was not able to lift and balance his head neck. Initially we were feeling happy with the thought that he can see, listen and can understand what we are saying. He started recognizing parts of body such as nose, stomach, ear, eyes etc. When he was of one year, he also started recognizing father, mother, grand-mother, grand-father and aunty. He was habituated to his grandma to make him sleep and aunty to sing a song.

One fine day we got the reference of Vasa madam from our uncle. We decided to send the reports to Vasa madam after six months after having told by our uncle as we were afraid to take him out anywhere as he would get an infection because of cold air, and used to suffer from cold, cough, and fever. Due to this reason, we used to keep him at home mostly. We hardly took him out so how could we take him so long to Mumbai we thought. Finally we sent all reports of Nachiket to madam in March 2005. Madam went through the reports and asked us to come to Mumbai on Sunday itself. It was very difficult for us to imagine that somebody can improve our son’s condition as there was lot of damage to his brain and doctors had nearly declared then only that he would remain on bed for his lifetime.

As we started with Dr. Vasa in 2005, we could see lot of changes in Nachiket. It was surprising that she never asked us for any investigations.It was difficult for us to bring him from Ratnagiri to Mumbai very frequently as after doing so much of travelling, he would fall ill for almost next 10 days.  But we used to send his exercise CD to madam and madam would suggest us corrections required or next exercise.  Nachiket has really progressed a lot since starting with Dr. Vasa.  Firstly, his head circumference has reduced without surgical shunting and now he is close to normal.  He now passes his stools daily. He understands what everyone is speaking, he reacts spontaneously.  He tells me when he is hungry, when he wants to go to toilet, wants to sleep, wants to go for shopping, etc.  He eats on his own.  He drinks water on his own.  He also buys us clothes of his choice; of course we pay for it but it is his choice that we wear.  He knows all fruits and vegetables by their names and he also knows all colors.  He knows even the names of different mobile companies. He knows all roads of Ratnagiri.  He is very fond of vehicles and takes his father on roads to watch different vehicles passing by.  He has basket full of toys which are all vehicles.  He plays games on computer alone.  Now we are sending him in a play group and he enjoys playing and socializing with other kids.  In 2012, he has begun to take few steps and walk on his own.  I am confident, that soon he will walk the roads of Ratnagiri on his feet.  Since Nachiket was a complicated medical case, it has taken him so long to be able to walk normally.  But it was a lot of hard work that we did as instructed by madam.  Most importantly, no wrong therapy was done on our child and so we can see that he did not get further spastic as he did with scissor legs when was 18 months old before we saw Dr Vasa. While undergoing passive supportive therapy we saw many children turn spastic thank god we could come out of scissor gait, thank god we listened to Dr vasa without any doubts. Dr. Vasa has not only corrected the brain problem of our child and given him a new life but she has also brought all our family members back to life.  She has also given us the strength to do hardwork, way to positive thinking and confidence to help others as well…!!!!

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