Thirty seven years ago- Biography 23

Yesterday Anna and I remembered Anita Susan Mathew, our daughter who was born on 17th November thirty-seven years ago.

Anna and I lived at the Christian Medical College, Vellore at that time, where I worked as a consultant in Child Health under Professor Malathi Jadhav. We lived in the hospital campus in a flat behind the Hospital Annexe. Arpit our older son, who was then three was looking forward to the arrival of a companion for him. Anna's mother was with us to help us during the time of the arrival of the baby.

Anita's arrival was easy and spontaneous, but she had to be to taken to the nursery as she had shown sign of jaundice on the second day. By then it was evident that she had some dysmorphic features and the consultants caring for her were on a debate about the tests to confirm the diagnosis. In the mean time the  bilirubin level had shot up and there arose a dispute whether she should be given an exchange transfusion of blood to reduce the serum bilirubin level. Anna and I sensed that the opinion was tilting towards not treating her as she had a dysmorphic state in which case they attributed the unusual rise in the bilirubin level to be on account of that underlying clinical condition. Professor Malathi called me for a discussion and enquired about our choice. Anna and I were clear that all treatment that would be offered to any other child in such a situation ought to be offered to Anita as well.  I knew that by then the discussion on this matter had spilled over to consult Rev A.C.Oommen, the chaplain of the hospital and Dr Benjamin Pulimood, the principal of the college.

Anita needed three exchange transfusions in 72 hours and needed an additional blood transfusion to correct her anaemia. We returned home after ten days in the hospital. Anita appeared weak and slept most of the time after every feed. We did notice that she was hypotonic and cried in low voice. But by the end off the first month she had gained wright and began showing social responses to sounds, her name and reciprocated facial engagements. 

Anna and I had several private conversations between us during this period about Anita and her dysmorphic state. There was grief and unsettlement emotionally during this period. Arpit was fond of his sister and there were many happy occasions of watching them interact in a touching way.  

I returned to work which was often long hours going late in to the night. I had the responsibility for the newborn nursery apart form supervising the care pf patients in the ward. I was the only consultant in the unit at that time apart from Professor Malathi. I was  just one year in to my work at CMC at that time. The post graduates in the unit were exceptionally able people, Drs Cherian, Jeeson, Bobby, Prabhakar, Mary, Eric, etc. As I was not used to the patterns and practices in CMC, I needed time to get familiar with the clinical routines in the department. The post graduates were supportive and as they were clinically sound and academically curious, the ward rounds were stimulating with bedside discussions. I felt stretched academically by them for which I was grateful. They were also clinically outreaching to do whatever was needed to take care of children. On one occasion when a child was slipping in to hepatic coma due to fulminant hepatitis, the post graduates under the leadership of Cherian was ready to do an exchange transfusion. I too felt enthused by that. The procedure did help the girl child to have an immediate respite. I was immersed with a demanding and stimulating clinical work that the underlying grieving process, thinking about Anita became submerged under the routines of each day. It was when Anna and I were together that we would return to think about it. Anna's mother's presence with us during this time was most supportive and affirming. 

Anna and I still recall an outing we had with Anita and Arpit to the outskirts of Vellore when Anita was three months old. It was the first outing for us after all the experiences we have had during this time. We sensed that even friends who were close to us stayed away from us since the word spread that Anita was 'dysmorphic'! This did disturb us, but made us conscious of the normal behaviour when people do not know how to respond in such situations. Yes, this was a period when friends became distant. There were occasions when Rev A.C.Oommen reached out to us. Dr Mark Steinoff, a consultant from the USA working in the child health department too was gracious and thoughtful. So the joy of the arrival of a new baby got reduced by the stormy experiences surrounding Anita's arrival. 

Anita fell ill when she was three months old with a respiratory infection and had to be hospitalised. The post graduates did take responsibility for her care and Professor Malathi was most supportive. Anita was on intravenous fluid support and antibiotics and did not show signs of recovery even after 48 hours. She had slipped in to a series of complications. On one occasion the the intravenous line got blocked and the post graduates could not find a venous access to continue the fluids. They decided to feed her orally, but she showed signs dehydration in less than six hours. In desperation I had to perform a venesection to put her back on the intravenous fluids. Twenty four hours later, even that access got blocked and fortunately six hours later, Dr P. Raghupathy, consultant in the other unit offered to access a scalp vein. That helped to restore her hydration, but she did slip in to coma and was taken away from our midst after another six hours.  She moved on quietly while in Anna's arms.

Arpit had come to visit Anita when she was sick in the hospital and that scene was disturbing for us to watch. He stood motionless watching Anita lying motionless in the bed. 

This sudden turn of events created considerable stress for Anna and myself. There were just few friends who were able to reach out to us at that time. Most of the others stayed away. This to me is a mystery even now! We remember Rev. A.C.Oommen and Dr and Mrs Pulimood, Dr Mark Steinoff, Drs. Jaison and Sally, who were thoughtful and caring in their approach and attitudes. In fact a few other friends who visited us made us feel more unsettled as they referred to Anita's arrival and home call as an occasion to 'recall any wrong we might have  done'!  

The funeral service of Anita in the hospital chapel was a moving occasion. Rev A.C. Oommen mentioned it asa  'painful visitation from God, and the caring God would reveal His message in due course of time to MC and Anna'! Rev. P.T. Chandapilla who too was present at the funeral referred to this experience as 'life changing'. We laid Anita to her rest in the cemetery at the toll gate at Vellore, which since then has been a sign post in our lives. Anna and I too have a place near her tomb for our rest when our time would come.  

The next few months were eventful in our lives. Arpit needed time to adjust to the loss of his sister that he had grown to be fond of. Anna and I needed time for recovery. Rev Oommen, Dr Jacob John, Dr Prabhakar Moses are people whom we remember now, for their kindness and support during that difficult season in our lives.

Professor Malathi was unusually concerned about us and how we were coping with our grief. The day after Anita's funeral Professor Malathi invited me to her room and reflected over the events of the three months. She approached the events with immense understanding and left the future open for us to feel free to make our choice. However she communicated that Anna and I were valuable members of the CMC community. She suggested to me about further training in Neonatology and taking more responsibilities in the department. At that time, I felt more inclined towards cardiology and was in touch with the professor of cardiology, Dr I.P.Sukumar, had mentioned to me a few times about  getting trained in Paediatric cardiology. Both the Principal Dr Pulimood and the director, Dr L.B.M. Joseph too invited us to have long term association with CMC. These conversations and interactions did help us in our grieving process. 

What helped us to interpret the meaning of the arrival and departure of Anita were two other instances. One family with their son with Down syndrome came for consultation. Holding my hand tearfully the father asked me, 'Is it not possible to do something to help my child and others like him to improve their wellness and skills'! A few weeks later, a mother came back with her two months old baby with stiffness of muscles after a stormy period in the nursery after her birth. I had taken care of her during the nursery admission, but now she already had signs of cerebral hypertonia. Her mother's request was, 'please do something to make her well'!

These unusual experiences awoke within us an urge to engage this question: 'What are we to do with our lives to respond to the needs of children who have neuro-developmental needs'! It was with Rev Basil Scott of the Bible Medical Missionary Fellowship, who called on us at that time, we shared this thought of pursuing to reach out to children and families who have neuro-developmental needs. He was forthcoming to help us in developing this search further. That was the beginning of twenty five years association with the BMMF till our retirement in 2008. So we left CMC in 1982, when we knew that the door was closed for us to to pursue the calling of being involved with developmentally disadvantaged children within the then setting in CMC. It was an year of waiting while working at the Christian Fellowship Hospital at Oddanchatram, which clarified for us the way forward. That is when we left for Chennai to begin the Child Development and Research centre through ASHIRVAD, a charity we formed, in 1983.

Anita during her three months of life with us was truly a messenger of God in our lives and home. It is now thirty five years since Anna and I initiated our response to the needs of children with neuro-developmental needs by starting ASHIRVAD. The first activity was to start a Child Development and Research centre at Chennai in 1983. 

Anita came in to our lives to bless us with a vocation. 

We live our lives in grateful remembrance of this experience which gave us an opportunity to grow in the awareness of the needs of others.

The arrival of Anandit a year later brought immense joy in our lives. Anandit and Aswathy with their daughter Thea now work and live at CMC Vellore.

So we have more than one reason to visit Vellore now. We feel grateful to Anandit who takes care to keep the tomb of Anita looking fresh all the time in the cemetery.

Anna and I celebrate the blessings we receive from Arpit and Amy  and Anandit and Aswathy and their children, Ethan, Ezra, and Esther and  Thea.

We remember Anita as messenger of love and direction in our lives.

Anita lives in our memory and her legacy is ASHIRVAD!

M.C.Mathew(text and photo)