SCID and my family – A Roll of the Dice: a story of loss, love and genetics

Mona Dash is an author and poet, and mother of two sons affected by SCID. Her first son died tragically at eight months old; her second son was able to have a successful stem cell transplant.

Mona shares her personal journey and opinion on why newborn screening for SCID is so important.

Newborn screening for SCID is vital and urgent. In the UK, a routine heel prick test screens newborn babies for certain serious conditions. Most parents, perhaps, don’t know what these conditions are; I certainly didn’t. When my second son was born in London, eight weeks premature, and four drops of blood were taken via a heel prick, I wasn’t worrying about cystic fibrosis, sickle cell disease, congenital hypothyroidism and other inherited metabolic diseases that the test screens for. Instead, I was thinking about a simple blood test he needed to have immediately, to check for a serious, fatal (unless treated quickly) condition, called severe combined immunodeficiency (SCID). My son had to have this at birth, so that he could be kept well and receive life-saving treatment as soon as possible.

To explain why I believe newborn screening for SCID is imperative, I need to go back several years, back to India, the country I came from.

‘Leave the country if you want to save your child’

It was almost the end of 1999, and I had become a mother. My baby boy was healthy, slept and fed well. My concerns were the same as those of any career-oriented, ambitious, young, married woman: how would I ensure the best possible childcare for my baby? How would I get back to my pre-pregnancy weight? How would I balance the global travel in the job I loved and make sure I spent enough time with my baby?

It turned out that these commonplace worries were not to be mine. God or the universe or my destiny, call it what you will, had earmarked me for a far greater struggle than I had ever expected.

My son started falling ill when he was about four and a half months old. The doctors in Calcutta were not able to diagnose the illness, the symptoms of which were a high fever and a strange red rash all over his body. The symptoms weren’t responding to antibiotics. We ran from pillar to post and met all the top paediatricians and skin specialists in the city, but none of the prescribed medications worked. After a few months, we decided to go to CMC Vellore, a specialist hospital in southern India. After several tests and scans, the efficient team had the answer for us: SCID – a chilling acronym for a rare genetic condition that is fatal unless treated. Though we had the answer, we didn’t have a solution because SCID wasn’t treated in India. The doctors said, ‘Leave the country if you want to save your child.’

We tried to raise the hundred thousand pounds needed for my son’s treatment in the UK, but it wasn’t to be. My baby died at eight months of age. The sense of devastation of losing a precious baby and standing by helplessly is not something one can ever forget.

Raising awareness, giving support and hope

Being a writer and a poet, so it was inevitable that, years later, I would write about my experience.

My memoir, A Roll of the Dice: a story of loss, love and genetics, has been published by Linen Press, UK. It is perhaps the only memoir written about SCID. It is a story dealing with the loss and sorrow of losing a baby to SCID, and then the struggle and challenges when planning for a second baby, who potentially could also be affected.

I write fiction and poetry. It would have been easy for me to write my story as a novel. It would have been easier not to delve into many personal details with complete honesty. Indeed, some family members have asked why I chose to bare my heart. Some friends said they found the memoir painful to read and felt very sorry for us.

But there are several reasons why I felt my story could only be a memoir. One reason, of course, is to raise awareness about SCID and primary immunodeficiency in general. Stewart Foster is the best-selling children’s author of a book called The Bubble Boy, which explores a fictitious condition called SuperSCID. He read 'A Roll of the Dice', and he tweeted, ‘SCID is real, full of heartache, suffering and frustration of search for help and cure. Mona Dash takes us on a journey that I could only imagine. Beautifully written, honestly written. I am a writer of fiction. This is the real thing.’ By writing a true account, I wanted people to take SCID seriously, to understand this condition which can run in families, through generations. SCID is fascinating, complex genetics.

A second reason is to offer support. When I was researching various medical conditions, SCID being one of them, my source of support was other families. I was reaching out to people I didn’t know, would never meet, but their stories and love helped me get through each day. I learnt from their experiences. I hope this book offers a simple message to anyone facing similar – you are not alone.

The final reason is to offer hope. This is a universal story of human spirit overcoming challenges, of the love that people are capable of showing one another.

The importance of newborn screening for SCID

The difference in the lives of my two sons is unimaginable. One son extremely unwell, diagnosed with difficulty, with a zero chance of successful treatment. The other born under complete supervision, an entire medical network waiting to do their best. Early diagnosis and treatment made all the difference.

When my son died in India, I imagined that in the UK, that would never be the case. Surely any child born in the UK would be diagnosed relatively easily and treated quickly? This, I know now, isn’t wholly accurate. Now I have come across families who have lost babies simply because the diagnosis was late. While the treatment options are fantastic in the UK, if the diagnosis is delayed, the child can contract other life-threatening illnesses. Then, the child’s little body can’t cope with the associated strong medication, and he or she may succumb during the transplant. Or the child may sustain long-lasting harmful effects to his or her lungs, liver and other critical organs. Parents have to face long hospital stays and experience complete disruption to their lives. Worse, they may lose a very loved child.

Yet this needn’t be the case. 

If only that heel prick test also included screening for SCID, the baby would have been diagnosed at birth, kept well and treated in a centre, such as Great Ormond Street Hospital or the Great North Children’s Hospital, Newcastle. The baby would go on to lead a normal life.

Why is newborn screening important? Because we don’t want our babies to die! For £2.50 (the cost of the test), we could ensure the healthy life of a child.

Posted September 219