Aryaman's Page

 

I, Lt.Cdr. Arjun Rana am serving with the Indian Navy and my wife's name is Anju Rana. We were 35 and 31 years old respectively when Aryaman was born. When my son Abhimanyu was 5 1/2 years old we decided to go for the second child. My wife's pregnancy was absolutely normal. Three sonographies were done at third, fifth and sixth month of the pregnancy. No abnormality was observed during these check ups. We were very excited about the arrival of the new member. I went and bought a new camcorder, which is still an item of luxury in India, so that we do not miss out on the new baby's activities as we had missed in case of Abhimanyu. We called Anju's sister Nita for help. She was coming for the first time after our marriage so we were excited about both the things, the new baby's arrival and her visit.

The gynecologist decided to go for caesarian as the due date was past by five days, the same thing had happened during my first child's birth therefore it did not cause any worry to us. The day for delivery was selected as 27 July 99. On the night of 25 July the whole family was involved in packing things for Anju and the new baby, even my son was enthusiastically putting all the things in the bag. He was the most excited person in the family. At about 11pm there was a call from my parents to wish all the best for the delivery. The next day various tests were done which is mandatory before a surgery. The time for surgery was decided at 9am. I reached the operation theatre well before time and saw my wife being carried inside, I wished her good luck and sat in the waiting room where I was joined by my wife's cousin. After about 45 minutes the anesthetist came and gave us the news that I have been blessed with a son and he has been taken to paediatric ICU. This did not worry us because after caesarian birth all the newborns are taken to PICU. When we reached PICU The doctor came out and told us that the baby is having certain anomalies which are as follows:

(a) big gap in the fore head forming a big 'V' 
(b) fingers and toes were fused 
(c) elongated thumb 
(d) hole in the heart about 3mm. 
(e) chonal atresia giving breathing problems. 
(e) cleft palate. 
(f) heart on the right side.

At that time it seemed that the world around me had fallen. I went and saw the baby, a pipe was passed through the right nose to clear the fluid from lungs. The paedics came and explained me about the various anomalies that the baby had and termed this condition as of Apert Syndrome.

I returned to the family ward where my wife was brought back after the operation. She asked me about the baby but I couldn't gather my strength to tell her the truth and I lied to her that he was perfectly fine and resembled his elder brother, Abhimanyu. The next day the doctor gave the correct details of the child to my wife.

After CT scan it came out that his scull bones were fused. During this period we also came across Teeter's web page where we got lot of details about this syndrome but got no information of any place in India where treatment could be administered. So I made it a point that when I will come to know the details of treatment in India then Aryaman will also join the Teeters page so that the information can be of use to the needy.

Very dedicated doctors of our Naval Hospital INHS Asvini Surgeon Cdr.  Mrs. S. S. Mathai and Surgeon Cdr. Y. P. Monga explained us about the syndrome and guided us on the treatment. In our search for the right doctor we came across Dr. Golleri who does cranioplasty surgery at Jaslok Hospital in Mumbai. The operation was scheduled on 09 Feb 2000. The surgery was finally performed on the scheduled day. The operation took about 7 hours but it seemed to us as if it were seven years. We were allowed to go inside ICU in the evening. There we saw our soldier resting after a long battle he was breathing slightly heavy but that was due to the cranial antresia. The next day we found his face swollen up which subsided after 3 days. He was discharged from the hospital after seven days.

After the surgery there was remarkable improvement in him. He goes for physio therapy to Bombay Hospital under the charge of Dr. Geeta Bharthan who is very specialized in this field. He has been assessed to be 3 months behind his mile stones. Now he is one year and 5 months old and he has started sitting and standing with support. It is pertinent to mention here, though Aryaman has come in this world with lot of problems but we have always felt that there is a FORCE which guides us and helps us to get the right treatment for him. For example the above mentioned Doctors have a special love towards Aryaman. In his latest review it has been found that few of his bones have again fused so he will be requiring another sitting of cranioplasty which will be scheduled for 06 December 2000. We will be updating his story as and when his treatment progresses. We are also very grateful to Don, Cathy and Teeter who devote there precious time and maintain this web site. I am always there to help and guide anyone (especially in India) who requires it. My address is as follows:-

Mrs Anju Rana
20 Bhagirathi, Near Afghan Church
Colaba Mumbai- 400005 Tel(R). 2153440

 

 

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