Personal Stories, Autism

Finding life after great loss

When I was 33 weeks pregnant, I heard seven words that would change my life forever.

“I’m so sorry, but there’s no heartbeat.”

My son had died, and I had to give birth to him knowing that he would never take a breath, never cry, never smile and never live. He was born sleeping on Friday 29 November 2013.

Instead of going home from the hospital with my son, I went home carrying a memory box.

Instead of celebrating finally becoming a mother, I had to arrange and organise my son’s funeral.

This was a time when I really struggled to make sense of what happened and of the world. How could my son have died? What did I do wrong? Did I cause his death in some way? I was so angry and insanely jealous of women who were pregnant and those who already had children, it was so unfair. Why me and not them?

The results of the amniocentesis test were given to me at the genetics department at the Queen Elizabeth Hospital in Birmingham after the funeral, as well as results of tests I had done on my son following his birth. I already knew that he didn’t have Downs, Edwards, Patau’s or Turner Syndrome, which are the four main ones they look for. But something else showed up a few weeks later from the test when the rest of my son’s chromosomes were cultured and analysed.

My son had two identical copies of Chromosome 15, and the geneticist used the phrase “incompatible with life”.  We were told that he would have had severe and life limiting disabilities, and the cleft lip/palate and talipes were part of that chromosome duplication. We were also told that he would have been non-verbal, severely autistic and suffered lifelong learning difficulties. Those with any problems to do with chromosome 15 always have epilepsy and seizures, and it was concluded that my son died from a seizure in the womb.

I need things explained to me in the simplest of terms as someone who is autistic, and all the medical jargon and terminology caused me to have some of the biggest meltdowns I’d ever had

I struggled to process all this information and was confused by the myriad of medical terms that were used. I need things explained to me in the simplest of terms as someone who is autistic, and all the medical jargon and terminology caused me to have some of the biggest meltdowns I’d ever had. Even though they said to me that nothing I did made the chromosome duplication happen, it just did (denovo, they called it) I thought I must have done something to cause his death.  The geneticist said that the chromosome issue had been identified as having come from the maternal part of his chromosome 15 – mine.

People crossed the road to avoid me after I lost my son when they saw me in the street. Long-standing friends suddenly didn’t call or visit anymore.  No-one acknowledged what had happened to me or mentioned him, it was if he never existed. I felt totally ostracised and alone.

Further loss

Over the next few years I lost many of my close family members.

First my father-in-law passed away in horrific circumstances when my local hospital completely missed the fact that he was riddled with cancer.  I then lost my cousin Brenda age 78 from complications of type 2 diabetes, and then my cousin Tony who had a heart attack age 57. In 2015 I lost my beautiful and beloved Aunty Maria age 83 from dementia. This was particularly hard for me because it felt like she had died before she had died. Bit by bit everything she was faded away, and a shell of a woman was left behind. This year I lost my Uncle Vincenzo at the age of 88.

I also suffered a further four early miscarriages. This time I was referred to a recurrent miscarriage clinic at Coventry and Warwickshire hospital. I was diagnosed as having a newly discovered condition called hyper fertility. Getting pregnant was easy for me, but keeping the pregnancies was not.

There was no treatment and nothing that could be done. Every month I had too much in the way of hormones and this didn’t allow my pregnancies to develop. However, women with hyperfertility often have random months where their hormones are spot on and pregnancies can develop which is what happened with my son. It was just such bad luck that he had the chromosome abnormality which meant he would have been severely physically disabled, autistic and have other mental disabilities.

My dream of being a mother was over. By this time, I was 43 years old, and I had to face that I was now too old to be a mother. I know there are many women out there who have babies in later life, but my Grandmother was 47, almost 48, when she had my Dad. Within ten years she was ill and couldn’t look after him, so he came to the UK from Italy to live with his sister, my beloved Aunty Maria, and she brought him up. I couldn’t risk the same thing happening to me and not being able to look after my children through ill health in a few years’ time. It wasn’t fair on them.

Life continues

I threw myself into my work and writing, and the light of my life was my dog Poppy. She was the best therapist and friend I could ever hope for, and still is. I founded the UK Cyber Security Association, the UK’s first dedicated membership organisation for individuals and companies working in cyber security. I founded two blogs www.cybergeekgirl.co.uk and www.frankieslegacy.co.uk.

Getting so close to finally being a mother, only to have it cruelly snatched away from me at the very last minute, changed me forever. I was on the road to motherhood, only to suddenly abruptly having to change course and go down a different road.

It wasn’t a choice I made, nor was it what I wanted. It was thrust upon me and I had to start again, get on with things and pull up my big girl pants.

As someone who is autistic, this huge change of circumstances was something I couldn’t process and did not understand. It wasn’t a choice I made, nor was it what I wanted. It was thrust upon me and I had to start again, get on with things and pull up my big girl pants. Life continued, and I had to continue with it.

2018 was another life changing year for me in so many ways. As well as being diagnosed as autistic this year my beloved Dad was diagnosed with temporal lobe epilepsy out of the blue age 71, which came as quite a shock.

Life after loss

I now work from home remotely and I found that working from home was my salvation in the light of my autism diagnosis. I have never been able to cope with working in an office environment and since being diagnosed as autistic I understand why.

Luckily my work is such that it can be done anywhere that I have an internet connection or wi-fi and isn’t reliant on being tied to a desk in an environment that freaks me out.  In fact, I am even more productive working from home to my own schedule and in my own space.

As the famous quote by the late great poet Maya Angelou said, “My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humour, and some style.” I intend to do just that in the light of my diagnosis of being autistic and embrace it, not fear it. I hope that people will see past the fact that I am autistic - I have so many positive attributes and so much to offer.

My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humour, and some style.

As someone who is autistic, I see things in black and white. I don’t see any middle or “grey” ground, and I find it hard to show my emotions. I keep them inside and I rarely, if ever, cry. I see things as factual rather than emotional, and even when I was told the words “I’m so sorry, but there’s no heartbeat” I didn’t cry straight away. It was a fact – my son didn’t have a heartbeat anymore.

Now that I understand this and that I deal more with facts rather than emotions through my being diagnosed as autistic, I can finally accept and deal with all the deaths and life challenges I’ve had thrown at me. If I hadn’t had my diagnosis, I may never have accepted them. Death is the one thing that is as certain in life as being born, yet we don’t acknowledge it or talk about it.  I have already planned my funeral and put all my affairs in order in a factual and organised way.

I am also committed to raising awareness of and promoting neurodiversity and raising awareness of the fact that if you think you might be on the autistic spectrum that it is never too late to get a diagnosis.  This is especially true for women who are more skilled at “masking” their condition than men.

This was certainly true for me, and I found masking it to be exhausting and debilitating. I have much more energy now and enthusiasm for life than I did before, I sleep much better and wake up feeling refreshed every day rather than exhausted. I’m sure it is no coincidence.

At the age of 44, I feel that I can finally start living my life. No masks, no covering up, no pretending to be someone I am not – just me.


If you are Neurodivergent (autistic, dyslexic, dyspraxic, bipolar, Tourettes, OCD, ADHD, ADD, or other) and are interested in becoming a contributor to Me.Decoded then please get in touch.

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About Lisa Ventura

Lisa is a writer, blogger/influencer & public speaker. Founder of Venture Content Marketing, Venture CxO Insights & UK Cyber Security Association. Loves dogs, heavy metal music. Is #ActuallyAutistic.