Que Sera, Sera: A mother's fight to survive the devastation of thalidomide and prejudice

By Sukeshi Thakkar

The thalidomide tragedy of the 1960s exposed the flaws in medical testing, unethical marketing, and the lack of accountability in the pharmaceutical industry. The voices of affected mothers and surviving adults with thalidomide-induced disabilities have often been overlooked. This is Sukeshi Thakkar’s story and her mother, Rama, was a victim too in this heart-breaking ordeal. Her life had been deeply affected as she cared for Sukeshi while tirelessly fighting for justice and financial stability. The emotional and stressful burden she carried was immense as she navigated a challenging path that required unwavering determination. Her struggle encompasses not only her child’s well-being but also the quest for recognition and accountability for the harm caused.

• Language: English
• Publisher: Brown Dog Books
• Release date: Aug 8, 2023
• ISBN: 9781839526701

Book preview

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Chapter 1

Mamma’s Prayers

8 February 2015

Sunday evening 6.30 pm prayers were arranged at our community hall in London for Mamma. It began with everyone giving their condolences to my sister and me followed by prayers. I stood up to say a few words about her. I looked up at the gathering and saw so many familiar faces had come to pay their last respects. It was breaking my heart thinking I would never see my mamma again. Having written a few words I took a deep breath and began:

My mamma was born on 30 November 1932 in Jinja, Uganda. She passed away on 3 February 2015 at the age of 82. Everyone’s mums are special, but my mamma was extra special. She was a dynamic, intelligent, funny, graceful, elegant, adorable, bubbly person.

She was thrown a challenge when I was born and she took it on with every fibre in her body.

Never did she complain or stumble but gave her life to raise me.

Mother Teresa once told her: ‘God has chosen you specially to be Sukeshi’s mother, to raise her to be a strong and an independent person like you.’

It has often been said that the umbilical cord between my mamma and me has never been cut. She took on the world and more – fighting and winning battles with the company that manufactured the drug which caused my disability. The only Indian woman to do so.

She was multitalented and was just as much at ease cooking the most appetising fare, entertaining with effortless flair, turning out the most beautiful hand embroidery and winning garba competitions as she was repairing her cars, driving in rallies, changing a fuse and winning badminton trophies. Her prime source of relaxation was music and playing rummy with her friends in Mumbai.

She was known as a rebel in her younger days and was reprimanded by her father for playing a small role in her friend Nargis’s movie.

She supervised to perfection, the building of her home in Mumbai, a tall order even for most men.

On more than one occasion in Mumbai, she told her driver to sit in the passenger seat while she drove because she thought, and rightly so I may add, that she was a better driver than the seasoned Mumbai driver.

She befriended film stars, politicians, police commissioners, dudhwallas (milkmen), shakwallas (green grocers) in short, people from all walks of life.

She was a charmer.

On 25 November 2011 my mamma had a stroke. I will never forget that evening. Everything changed. Roles were reversed. I became the parent and she my child.

Despite being advised to put her in a care home I made the decision to take her back to our family home. To care for her 24/7 to the best of my ability as she had done for me since my birth.

Four things that were her passion were eating, talking, dressing up and going out which were snatched away from her during her illness.

During the three and a quarter years that she was ill she had been hospitalised only twice – once for shingles and the other last week for a few hours before she passed away.

Above all, I will forever be grateful to Kunda, my carer who went beyond the call of duty of taking care of mamma during her illness. She thought of mamma as her Yashoda maiya.

I have been very fortunate to have had HER as my mother.

I feel that Lord Shiva and Maa Parvathi had blessed her with their individual strengths.

She is now united with my father where she can talk to her heart’s content and he can listen patiently … I salute my mother MRS RAMA DILIPKUMAR THAKKAR.

It seemed surreal saying those words about my mother. I felt as if I was having a nightmare, I would wake up and everything would be as before.

Before? Before what? Before when I was too young to understand, or before she had the stroke? Was it my nightmare, or hers?

Her nightmare must have started the day I was born …

EAST AFRICA

Chapter 2

UGANDA - My Birthplace

I was born in Kampala, Uganda, East Africa in a nursing home that belonged to my mother’s older sister Pushpa Vasant on 16 March.

It was a beautiful day and the city was alive with vibrant colours and joyous celebrations of the festival of Holi. Holi festival has an ancient origin and celebrates the triumph of good over evil. The colourful festival bridges the social gap and renews sweet relationships. On this day, people hug and wish each other ‘Happy Holi’. Holi is a special time of year to remember those who are close to our hearts by splashing colours! Holi is the time to unwind destress and bond with sweets, thandai and colours. Holi is the apt time to break the ice, renew relationships and link yourself with those you want to be with. It is the time to colour your mind with positivity and happiness. May God give you all the colours of life, colours of joy, colours of happiness and colours of friendship.

It must have been the opposite for Mamma, the joyous occasion quickly turned into a nightmare

During her second pregnancy, first trimester (carrying me) Mamma had morning sickness and insomnia. She had been feeling very uncomfortable. My paternal grandfather had come to live with us in Uganda for some time and had a heart condition, headaches and insomnia for which he was taking thalidomide (under the brand name Distaval) so when my mother had a couple of episodes where she couldn’t sleep and was agitated and feeling sick my father gave her the pills; my grandfather didn’t show any adverse symptoms and there was no warning label. The sedative property in it activates the forebrain sleep centre unlike other hypnotics and therefore does not cause respiratory depression, incoordination or hangovers.

My father being a doctor suggested she take a couple of pills that would relieve her symptoms. These pills were also available to him through a pharmaceutical representative that came round to all the doctors in the area to encourage them to prescribe the current popular drugs on the market (he described them as a wonder drug). My mother only took two pills. She did not need them after that, and as they say, the rest is history …

The baby came out after some labour pain. Mamma told me that she could see from the troubled expression on the midwife’s (Rama’s older sister Pushpa Vasant) face that something was not right. ‘I wanted to hold you, to see you, to feel you.’ But I was quickly taken out of the room and mamma was sedated.

Pushpa was joined by another doctor who was horrified to see a baby born with shortened upper limbs with four digits on the right and only two on the left best described like flippers.

I was wrapped in a towel and sent away to the perambulatory services.

Pushpa called Dilip (my father) at work, he was told to come urgently and to bring anaesthesia with him.

On waking up Mamma demanded to see me, her baby, but was once again given some excuse or other from the nurses in attendance.

Finally, after a lot of pleading from her, a nurse brought in a beautiful baby swaddled in a soft cloth. Mamma holds me close to her and thinks she is very pretty, and she coos at me. Just as Dilip arrives, she told him she could not understand what all the fuss was about while unwrapping the blanket to see her beautiful angel …

They were both devastated. Holding me in her arms, my mother recalled, ‘I looked into your eyes and knew that you were mine and nothing or no one could change that – I was taking you home.’

My father’s first reaction was ‘Oh my God, what’s happened?’ Quickly recovering he told the family members gathered around him to stop crying. He said he needed time to think and to talk to his wife.

Aunts and uncles present tried to persuade him to stop thinking emotionally and to get rid of the baby as quickly as possible and to move on with life. They talked to both of them about the stigma attached in our society if they kept this child their family would be shunned by the community and maybe even, by his friends and families.

At that time, in those circumstances, in that place, everybody was flabbergasted; nobody had seen anything like this so naturally the first instinct is to think just how was I going to survive? All sorts of questions went through their minds. What is going to happen to me? I couldn’t understand it when I was younger, but realise those reactions must have been quite natural.

Papa was not listening. There were already thousands of questions running through his mind. Why this had happened? What had caused it? Could Rama accept this child? He was unsure if they would be fit to parent this baby. Financially could he afford to support a family and a disabled child?

There was a lot of bawling and chaos as the family was trying to vent their emotions and normalise things. The family had a hard talk with my parents and advised them to give me away or kill me. One family member even offered to take me into the jungle and leave me there at the mercy of the animals.

I believe my grandfather was very angry at these suggestions and told them in no uncertain words, ‘If nobody wants her, I’m going to keep her’, ‘Nobody is going to do anything of that sort; I’ll take care of her.’

In retrospect, I don’t think either of those options were a bad idea as it would have saved a lot of heartache … especially for Mamma.

My father, being a doctor himself tried to rationalise it as an act of God to Mamma and suggested abandonment and moving on with life. She strongly disagreed and they both gathered courage and made the decision to take their precious baby home with them. It was a decision