Dena loves music, art craft and has a healing touch and can make many in the family heal. Her life remains the focus of my life and is very much the first topic chosen for my memoir.
It was the year 1990 maybe a month after the birth of my daughter in Mumbai. While I had gone back to Vadodra, my family wife Daisy and parents were all worried about our daughter Delna.
All along the period of pregnancy we were as a couple getting adjusted to our marriage. We had left Mumbai to pursue a career as owners of a small set up which is named a hospital but is just a single specialty Nursing Home with 9 beds to cater to basic Orthopedic work. While we were having attachments in other larger hospitals our aim was to settle and progress in a relatively less competitive environment where it was possible to pursue a career in an ethical manner without resorting to corrupt practices. The struggle to set up a correct mix between a high class set up and a compromised acceptable set up consumed our life and, in this situation, came the news of Daisy’s pregnancy. My anxiety to fulfill both these roles without much direct family support as for both of us our parents were in distant Mumbai. Those were days of scarcity, and we had no internet or mobile phones. STD calls after 10 pm from public booths were our oly lifeline. Both of us were always talking of having a normal healthy child with no preference for gender.
Daisy I recollect became fond of milk and in the phase when I was veering to a vegetarian lifestyle. However, let me cut the old details and come to the conversation with Dr. Hema Purandare the Geneticist who was to give final verdict on the genetic report of our Delna.
We went in a taxi with me holding our Delna in my lap. She was fed but was limp and a bit sleepy. Although we had enough indications to believe Dena had Down’s syndrome I remember saying “I am sure Delna will be fine and she just has chinky eyes maybe inherited from a few generations past aunt”. In my heart I knew I was just trying to cover up and put up a brave face and blanking the reality and the facts staring in our face that our Delna was not normal. After 35 years my memory of the room has faded but the memory of Dr. Hema Purandare who had been my teacher of embryology in Grant Medical College and her words are still there. She gave me the report and addressed us. “Delna has Trisomy 21 which is the term for Down’s Syndrome.” We were shell shocked but I recovered “Is it a mild mosaic pattern or severe full blown Down’s? She is improving and feeding well in the last few days her muscle tone is better than before. Perhaps she will be near normal.” Dr. Purandare started by saying “ We are a center which detects birth defects and she said that these can be very severe or mild but of all the defects Down’s syndrome is the best. Delna will be very happy lovely child and with proper care and early intervention in terms of various therapies will become a joy to behold. She will be able to learn everything needed to live a near normal life. She will be fond of music and you will able to send her to school. While her body tone will be weak she will be able to do physical activity like most children but unlike others all her milestones will be delayed.” What she said lifted my hopes and this was in sharp contrast to the casual manner in which senior Pediatrician Dr. S M Merchant had told the sister in Breach Candy. “O she’s a Mongol” This was told as though Delna was a statistic or a one among the many he had seen. Then he told Daisy “Treat her for jaundice with phototherapy and take her home. After one month come to my clinic with genetic report and I will tell you what to do. There is no active treatment and depending on the need I will send her for various therapies. You will not be able to do much in terms of education. I am going to another clinic please meet me after one month.”
Coming back to Dr. Purandare Daisy asked. “Will she be able to go to school?” Dr. Hema said many Down’s syndrome children who are given early therapies are able to go to school and get a sound functional education, but they lack the skills to use logic. They become stubborn and illogical especially when faced with unexpected situations and are not well prepared. The way for Delna is to start the therapies and go to school but after say 4th or 5th grade they will be unable to cope up with studies especially science math etc. And they will need to go to special schools and undergo vocational training. They are good in arts crafts and love music and Delna will be the loveliest child you can dream off. She can give unconditional love to parents’ family and friends and will give great joy to one and all”. While the manner of speaking was so positive the reality of an uneducable daughter who will need protection and care for life was yet to sink in. We told her about how our pediatrician gave us little hope. She said “ I will give you the number of Dr. Y Amdekar pediatrician and Head of Department of Pediatrics. Go to him and he will not only give correct treatment but guide you to the best resources in Mumbai”. I could see Daisy the more practical among both of us crying, I was leaving the Birth defect center focusing and looking forward to the life and times with our lovely daughter. With a strong heart and a optimistic feeling I sat in the cab with my Delu in my lap. Suddenly, as my eyes looked at the little vulnerable Delu, a dam burst and I was sobbing and the enormity of the news finally sank in. After all the months leading to the day of the final verdict I was clutching at straws and was hoping that all was going to be fine. I realized that this was a defining moment in our lives. For none of us lives would be the same again. Every decision and action will be dictated by Delna and her needs.
However, I told Daisy “We will never look back with regret and lose heart, as fortunately for Delna she has educated parents with enough financial backing to provide the best for her.” Daisy was consoling me as she realized that after putting up a brave front for so many days she wanted me to release my emotions. At the same time, she resolved to stand together and work hard to give Delna the life she was entitled to.
About Dr. Hema Purandare, I will never forget her for her words, and it was a classic example of telling the truth and focusing on positives without omitting negatives. Till this day her words ring true and Delu at 35 has grown to be my teacher and spiritual guide. Besides, I call Down’s syndrome a syndrome with a love chromosome. At the same time I will not forget Dr. Merchant for his insensitivity and hurtful words.