About the book
Baby, you hold on, and I will hold on…
A family discovers they have a medical condition written in
their genes. A child is born in India with the potentially fatal
condition SCID (Severe Combined Immuno-Deficiency) for
which there is no treatment in his country. A mother faces
an uncertain future with resilience and hope.
Mona Dash’s wish for a child turns her life upside-down.
Her roller-coaster journey spans ten years, takes her from
India to London, and involves her in the complexities of
Mona Dash writes her story of genetics roulette without
self-pity, with astounding courage and even humour. This
memoir contains valuable information for couples facing
infertility and complicated pregnancies, for parents of
premature babies, and children with SCID.
With an Introduction by Professor Bobby Gaspar of Great
Ormond Street Hospital, pioneer in gene therapy.
Section 1 – Rupture – FEAR
I could feel the fever climbing.
It was a Thursday, in October, in 2006, in my home in London. Nothing unusual about the day. I was exactly fourteen weeks and five days pregnant. I was working from home and planned to attend my body balance class in the evening. Inspired by the perfectly toned pregnant women who dexterously managed dancer and warrior poses, I was looking forward to completing the rest of my pregnancy in yogic perfection.
But by early evening, I was feeling feverish. While I normally wouldn’t care about a mild temperature, I knew I couldn’t, shouldn’t, take a risk. Giving up the vision of doing graceful Tai Chi moves with my baby bump, I settled on the sofa. I consoled myself that I could go the following week. As always my laptop was with me; a couple more emails to complete and then I would get something to eat and have an early night.
I could still feel the fever climbing.
The first trimester had been a worrying time for us because there had been some mild bleeding or ‘spotting’ from as early as six weeks. Several times I had been sent to the early scan unit in the local hospital but as the weeks passed, the episodes lessened, and at the milestone of fourteen weeks and five days, that Thursday, I was finally beginning to relax. I would breeze through the second trimester, supposedly a more peaceful, restful time.
I should explain what the early scan unit is. It sat not within but on the periphery of the maternity ward. Here they placed a little device on your stomach and checked the heartbeat, checked if there was a heartbeat, and either assured you of the viability of the pregnancy or advised you to give up on this one and try again. They gave you a picture of the scan, grey circles on black paper, and pointed at the bean shape embedded in the centre. They said, ‘Look, that’s the embryo, that’s your baby!’ or ‘Sorry, dear, but you can treasure this as a keepsake.’ There was a sense of desperation in the little waiting room and a dividing line between those who would lose their babies too early and those who would bear their children and their dreams. Cards and messages from parents covered the walls.
Every time I was scanned and heard the loud duk-duk-duk-duk inside me, a wide smile would flash on the nurse’s face. ‘Baby’s fine!’ I imagined writing a happy, flowery card to this kind, maternal-looking nurse in my second trimester.
I worked as a solution sales manager with travelling an integral, almost the main aspect of the job. Some days ago, I had taken a train and gone into the depths of High Wycombe for a meeting and in a coffee break had gone to the toilet only to find more of those dreaded little red spots. I could hardly concentrate for the rest of the meeting. The next day I was back in the early scan unit and thankfully the nurse said, ‘Baby’s fine.’ But I had to stop travelling until I reached the next milestone at the start of the second trimester when everything was meant to stabilise. So I had to tell my boss that I needed time off.
Mr. Smith, my gynaecologist, had established me on a daily dose of Clexane injections. One of his previous blood tests had shown a high factor of protein C. I didn’t quite know what that meant nor why I had developed it but these subcutaneous injections, given just under the skin, were necessary because otherwise I might be prone to miscarriage.
So I’d learnt to inject myself in the stomach every day. Keep your hand steady, place the needle against the skin of your stomach, pierce carefully at an angle making sure you are not puncturing a blood vessel. It’s easy, don’t worry, I told myself. After feeling the sharp prick, I carefully put away the used needle in the waste bin provided by the local surgery. The injections were to continue all through the pregnancy, a part of my routine – eat, brush teeth, inject, read, sleep. The bin stood next to my bed and filled up with sharps, like a time counter.
In a week, I was to have a special early gender scan in King’s College, London. The result – boy or girl – was crucial. Not just in one of those pink or blue nursery ways, not in an Asian ‘I must have a boy’ way, but in a far more crucial-to-life-itself way.
Because I could never forget what had happened before, six years earlier.
It was in the kitchen, that Thursday of the mounting fever, after I’d placed my plate in the sink, that it happened. A quick moment. No warning, no pain, no noise and suddenly a thick pool of colourless liquid at my feet. ‘Amniotic fluid’, I heard myself mumble. Even though I’d never seen it, I just knew. I stared at the gel-like liquid for a while, thick and unspreading on the floor and knew it was the fluid inside the uterus, the fluid that surrounds and protects the baby, essential to its development. Fragments from school Biology lessons flashed through my mind. I can’t remember now, was it my hand which reached for some kitchen towels and mopped up the liquid? Or did I rush to the bathroom first and then come back to clean the floor? Did I stare for seconds or minutes, looking at something from deep inside me out there in the open, something that until a moment ago was next to my baby? I don’t remember exactly what I did, but soon, trying to stay calm, I went back to my sofa and called my husband. He was out for dinner with some colleagues.
‘Hello? Err, hello, there was this thing now…you know…fluid…,’ I blurted.
‘More bleeding?’ He was in the heart of some London pub, loud voices around him, but I heard the worry in his voice.
‘No blood, no, not even a speck. It’s liquid…I mean, fluid,’ I said. If it had been a bright pool of blood on the cream tiled floor, I would have panicked. A colourless pool of liquid, though unusual, looked harmless.
‘Fluid? Oh, then that’s not too bad. I’ll be home soon. We will call the midwife in the morning. She’ll know what to do.’
He sounded composed so maybe it was all right. I should rest now. I should go upstairs and get into bed. That’s all I needed to do. Just sleep and let the fever ease. Instead, I reached for my laptop and searched ‘loss of fluid in second trimester.’ A few links came up – low water, loss of amniotic fluid, leaking water, but it was the third or fourth link on the list that caught my eye. An unknown term – PPROM (Pre-term Premature Rupture of Membranes). The word itself sounded violent.
What I read was terrifying. A premature rupture of membranes referred to a loss of amniotic fluid before thirty-seven weeks. The amniotic fluid is crucial and fulfils several functions; it helps protect and cushion the baby inside the sac and protects both the baby and the uterus against infection. It also plays a vital role in the development of internal organs like the lungs and kidneys. The prognosis was grim. 90% of women who suffered a preterm rupture went on to experience labour within forty-eight hours. Even if the pregnancy continued, there was a high risk of prematurity and a higher risk of death due to pulmonary hypoplasia – undeveloped lungs – at birth. The baby would die like a fish out of water. Unexplained, rare, no treatment, death, premature labour, infection, termination, death, death, death – the same words recurred in article after article.
But this couldn’t be my diagnosis! I was only fourteen weeks into the pregnancy. Surely there was time for the sac to patch itself and heal? Besides, after all that had happened to me the first time around, and with my concerns about what could still happen after the birth, the pregnancy was the one thing I had assumed would be problem free.
I didn’t call my husband again as I knew he would tell me not to self-diagnose. His take on the internet was that while it was a source of information, equally you could diagnose yourself with cancer after a mild rash. In fact, I didn’t think of calling anyone, and eventually, laptop shut down, I went upstairs. I tried to sleep but some of the stories played on in my mind. Some women had stressful pregnancies and premature deliveries, but healthy children now. There were many whose babies died the minute they were born, their lungs too rigid to breathe. Death didn’t sit well on babies. I knew. I had seen it with my own eyes. I dug deeper into the duvet, shivering with the fever and fear.
I was woken by a cold sensation. My husband was standing in the darkness, holding a strip of wet cloth on my forehead.
‘What are you doing?’
‘You’re burning with fever. I thought this would help.’
It all came back. The mosaic of nightmares closed on me. The fluid. I told him about, the stories I’d read.
‘But there has been no more leaking after that, isn’t it?’ he asked.
I didn’t know what to say. The shock of that moment – the realisation of what shouldn’t happen but had happened – numbed me.
I went to the toilet and checked. There didn’t seem to be any further leaking so maybe everything was fine now. We had to wait the night out and would call the midwife, Claire, and Dr. Patel, our GP, in the morning. They would find a way. Neither of us thought of going to A&E. When I had my first episode of spotting about six weeks into the pregnancy, we’d rushed to emergency and waited for hours to be seen. Going there now, in the middle of the night, when I wasn’t in pain or bleeding, didn’t seem necessary. Besides, in A&E we would be seen by a doctor with no background knowledge of my case. And I needed my fantastic gynaecologist, Mr. Smith. I needed someone who knew and understood what to do especially for me, specifically for me, because of everything that had happened before.
I tried to go back to sleep, hazy, praying. God, please help, please help. The night had to end. Tomorrow there would be a solution.
But memories came rushing back. I was back on that fateful day when my life changed irrevocably. I was back in that scene which was always on play, that scene which part of me never stopped re-enacting, wherever I was or whatever I was doing. That scene, that day, from years ago, from the city I had never returned to, from the country I had left, ran on a never-ending reel. The date was 22nd June, 2000.
22nd June 2000, Calcutta, India
A terrified heart, dark brown sandals rushing up the stairs to Flat 6 on the third floor. The door is open. People are waiting in silence.
The footsteps are mine, the living room is mine, and the people inside are waiting for me – the mother. Of course the mother is expected to be present in a situation like this. The centre of attention. A huge responsibility to behave in a manner befitting the tragedy.
‘Please come back, as soon as you can. Both of you.’ My mother-in-law’s call had come just minutes after I’d reached my office that morning. I knew that unless things were bad, she wouldn’t call us back from work. I didn’t dare ask and face the truth.
‘Sorry, guys, I need to leave. Looks like my baby’s very unwell.’ I spoke calmly to my colleagues. My husband had already left his office and was on his way to pick me up. They nodded briefly, not realising how unwell was unwell.
It was only ten o’clock but the June heat had settled into the morning. I looked out at the familiar crowded roads as we drove back. Neither of us said a word. My heart felt as it was being squeezed tight. Roughly. I felt it physically contracting.
Yet as I ran up those stairs into stillness, into that waiting void, I was still hoping my heart had been lying. I was still hoping that life hadn’t deserted us. A dread, a ghoulish curiosity gripped me.
A slow murmur rises from the room as I enter. ‘The mother,’ someone whispers. I don’t return anyone’s glance. The door to my bedroom is directly opposite the entrance. I push it open.
He is lying on the bed. Quiet. Still. The air-conditioner whirrs. The room is cool. My baby is wearing a thin white t-shirt and blue shorts with Coca Cola written in black. Ordinary clothes until he is given a bath and changed into a smarter outfit. His face is calm. His curls blow gently in the breeze from the fan. I collapse on the bed. I hold him, kiss his forehead, his nose. He is rigid and cold. I can’t understand that. I hear some loud cries, deep like a man’s, shrill like a woman’s. Who is crying? My husband? My mother-in-law? The nanny, Suchitra? I feel someone’s hands on my back, trying to support me – the someone who is crying loudly. I shake them off impatiently. Don’t touch me anyone, please! I am still flummoxed by my baby’s rigidity. What do you mean, you can’t feel me, I am your mother? Where is my baby’s softness? Why is his little palm motionless on mine? How can someone three-dimensional feel one-dimensional? Why is it that when breath leaves, the body becomes stiff?
People – neighbours, maids, well-wishers – open the door and look in. I know everyone wants to comfort and hold me when I break down and cry. They are almost waiting for that to happen. I don’t. I just want to shut the door and sit here in the cool with him.
You turned eight months today. Your passport was issued today. Two cheques have arrived from `unknown kind donors. Only about £2000 of the £100,000 we are trying to raise for your treatment but still, big drops of water in the ocean we need to create. To take you to London so that you can have a bone marrow transplant at Great Ormond Street Hospital. It’s the only cure for the condition you have, Severe Combined Immunodeficiency, known as SCID, an acronym that I first heard only a month ago but which will define me forever.
This morning, when I was waving at you just before leaving for work, you stared at me. You were on Suchitra’s lap, feeding from your bottle. A stare, such a fixed intense stare, as if you wanted to tell me something.
‘What is it, baby?’ I asked. Nothing from you. Not a smile, just that look.
Later, I would be convinced that you knew. That you wanted to tell me, ‘Hold me, Mummy, just one more time. Once you leave, I can go too.’ But I was pushing myself so hard to get to the office, to write to yet another doctor, to count the cheques coming in, to organise whatever I could, that I didn’t stop to give you a cuddle.
I stroke his face. I can’t believe this is it; the end of my fight, the end of my baby. The bedside table is weighed down with medicines. Tomorrow – we won’t have to measure tonics, crush pills. Tomorrow – what were we meant to do?
More people open the door and look inside. I realise they look familiar. They are the colleagues I was with only an hour ago. They too have come to see me, I think. So many people here. I stay sitting on the bed, baby on my lap, and smile at them, as if this is very normal. I don’t cry.
‘You are taking it so well,’ someone says.
How does anyone take something like this? I wonder.
(Reprinted with permission)
Mona Dash writes fiction and poetry. Her work includes a novel, A Roll of the Dice (Linen Press 2019) Untamed Heart (Tara India Research Press 2016), and two collections of poetry, Dawn- Drops (Writer’s Workshop 2001) and A certain way (Skylark Publications 2017).
She has a Masters in Creative Writing (with distinction) from the London Metropolitan University. Mona was awarded a Poet of excellence award in the House of Lords in 2016. Her work has been anthologised and published widely and she has been listed in several competitions. Her short story collection ‘Let us look elsewhere‘ was shortlisted for the SI Leeds Literary Prize 2018.
Mona leads a double life; apart from being a writer, she is also a Telecoms Engineer with an MBA and works full time in a global technology organisation. Originally from India, she lives in London.
Social media :
Twitter : @dash2mona
Insta : wordsfrommona
A Roll of the Dice was published by Linen Press (www.linen-press.com) and is available for purchase on Amazon and Kindle and from Linen Press (https://www.linen-press.com/shop/a-roll-of-the-dice/)