On Sunday 12th January 1992, after a quick drug free labour, our first son was born. He came out dark skinned and my first thought was ‘oh he's got the same skin colouring as my sister’s.’ The birthing room filled with doctors and nurses, and they whisked him away from my arms and used an intubation balloon to suck his airways. We were in shock. Even the midwives stood helplessly on, as they put a mask over his head and a machine breathed air into his lungs. The medical staff took him away to the special care baby unit and my husband and I waited for the midwife to continue with the remaining process of the birth.
When we finally went up to the unit, he was in an incubator, his chest rising and falling with the aid of a machine. The next few days were a haze. Our families were called, and we went into robotic living mode. I remember nurses coming to my room and doctors informing us of the investigations to fathom why he was so sick. Eventually, a doctor came to inform us he was unwell, and they wanted to switch off the machine that was keeping him alive. She told us it was inevitable because of the lengthy and complicated labour I had. My husband and I were in shock.
We sought a second opinion and on Tuesday morning, two days after his birth, they transferred him to another neonatal unit. We named him Chetan, which means strength, and he had it in abundance.
The doctors arranged for MRI and CT scans to be done and they discovered that our son had an aneurysm in his brain at birth. Once all tests came back, we were told he couldn’t survive without the breathing machine. We switched the machine off, and he breathed on his own.
The name we’d given him was apt, strength, and we believe he brought with him the strength to help us look after him in our home for the remaining time he was with us.
As new parents, we learnt to feed him, keep his temperature in check, special massage, and provide sensory stimulation. All parents do this with a profoundly disabled child with a limited life expectancy.
Chetan lived for eight weeks and left us on a Sunday 8th March 1992. We knew he couldn’t stay with us. All the signs pointed to his body shutting down. We buried him in his own plot. His white gravestone has the emblem Om engraved on it, and he is with other babies in the children's section of the cemetery. Often Hindu families don’t opt for this, preferring an unmarked grave, but we wanted to go to a place to mourn and do so regularly with our sons, who arrived two and five years after him.
For the first couple of years, I buried my feelings. I have always felt sad in January to March, and I have put it down to dark, long days of winter. Work, motherhood, life took me to new levels. I held down a successful but stressful job working for BBC News and Current Affairs, and my children were bright and healthy. As the years passed, I heard about other women who also dealt with issues of depression, anxiety and guilt. Yes, guilt, any woman who has had a sick child knows of the guilt, the what if I did this, what if I did that, is it my fault? My mind went into overdrive, and every year the thoughts kept flooding back. That it was all my fault.
I joined a creative writing group, and the novel just spilt out of me. I remembered every comment, every incident in vivid colour, the feeling of inadequacy, the search for a miracle to prolong his life. I published my debut novel in two parts in 2020; My Heart Sings Your Song and Where Have We Come (finalist Wishing Shelf Book Awards 2020).
A few takeaways we’ve embraced from our experience; the vein could have burst then or at any time or never. My husband and I worked well as a team. Our support network was fantastic. We had to embrace our grief and our happiness. I am proud to have been a mother to such a unique and beautiful child and if I had to choose the same path I would without hesitation, I am who I am because he came into our life.