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
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