My Son, Arthur

**Content note - infant loss

I’m writing this post because August 17th will be the first anniversary of the day my son, Arthur, passed away.? Arthur died last year aged 4 months and 2 days old.

I thought it might be helpful to share some thoughts about how to communicate with someone going through an unexpected bereavement (sadly, I know I’m not the only person in my professional circle to have experienced child loss). And to publicly say thank you to my colleagues for supporting me.

I’d love to tell you a bit about Arthur to begin with.

Arthur was born the day after his due date. We had him home for 10 glorious - albeit sleep-deprived - days, but on the evening of 25th April, our beautiful boy stopped breathing.

On the most traumatic night of our lives, I performed CPR on Arthur before a paramedic arrived and we were rushed first to our local hospital, where he was stabilised enough to then be transferred to the paediatric intensive care unit (PICU) at St George’s hospital in London.

Arthur was diagnosed with “near-miss” sudden infant death syndrome (SIDS). He was expected to have died of SIDS at 10 days old, but we prevented it in the short term. Unfortunately, Arthur had suffered a serious brain injury due to a lack of oxygen (known as hypoxic-ischemic encephalopathy, HIE).

As the weeks went by, it was evident that Arthur’s HIE was affecting him in ways we couldn’t have imagined, and he gained a whole host of complex needs. Devastatingly, it became clear that Arthur needed the support of a specialist paediatric palliative care team to help better manage his symptoms and get us acclimatised to him likely having a short life.

After three surreal months in the PICU, we were transferred to Shooting Star children’s hospice in Guildford for what turned out to be end-of-life care. Five weeks later, our brave little boy died peacefully in my wife’s arms on 17th August 2023.

If you’d like to read Arthur’s story in more detail and perhaps donate to the incredible hospice that looked after us all, see https://www.justgiving.com/page/in-memory-of-arthur.

I’ve learnt that grief isn’t always dealt with very well (in work and otherwise), particularly when it comes to something so unimaginable to most people. I’m no expert, but I wanted to share some things I believe most bereaved parents would like you to consider. Hopefully some of this is also relevant to grief in general:

• Grief is not linear and there is no ‘getting over’ the loss of a child. The death of a baby or child is in many ways different to that of an adult; we’ve not only lost our child but we’ve lost our entire future and will have to live with a little person missing for the rest of our lives (with that in mind, please don’t try and compare it to your dog/grandma/elderly neighbour dying…this happens, believe it or not);
• Our greatest fear is that our children will be forgotten. Please say their name (we don’t get to hear it often enough);
• Be mindful of meaningful dates (e.g. birthday, date of death, mother’s/father’s day, due date);
• You won’t make us more sad by talking about our child or what happened; it’s on our mind 24/7. There will be times you might not get the phrasing quite right, but that’s ok [worth noting that this is something bereaved parents can differ on, some want to talk about the child in all situations while some find separation while at work, for example, is helpful. Ask the person in question what their preference is, and remember that might change with time];
• There is a difference between saying ‘moving forward’ and ‘moving on’. We will never move on from the love for our child, that grief will sit with us forever. But gently moving forward (like coming back to work) is a means of survival;
• Avoiding us because you don’t know what to say adds to the pain. Saying nothing is often worse than saying the wrong thing;
• Try not to offer platitudes or find the positives in the situation, this can’t be fixed ('everything happens for a reason', ‘he was too beautiful for earth’, ‘God wanted another angel’ etc);
• Using sentences that start with ‘at least’ can be really hard to hear ('at least he was only 4 months old', ‘at least you know you can get pregnant’ etc.);
• Remember that asking ‘do you have kids?’ isn’t always the kindest conversation starter. Not just for those who’ve lost babies, but for anyone struggling to conceive;
• Be sensitive when announcing pregnancies (both in and out of work) and talking about your living children. That’s not to say you can’t talk about your living children with us, please do, just don’t say things like “my daughter’s a nightmare… you can have her instead!” (again, I have heard this said).

I want to give an enormous thank you to my amazing team at work – Eyad Tachwali , Gladys Y. , Kyle Owen , Leo Brenner , and Neal Solanki – as well as to my previous and current managers, Kabeh Vaziri and Carsten S. . Your kindness and support have meant more to me than I can ever say. And I’ve genuinely felt supported by Gartner throughout this whole journey. Believe me when I say, this really isn’t a given at every organization when it comes to baby loss, and I’m grateful for the compassion I’ve been shown time and again.

For those of you who have read to this point, thank you for engaging on a tough subject. It’s nice to think that Arthur might be known a bit more widely.

And in the interest of transparency, my wife is pregnant again. Pregnancy after loss is a complicated beast and brings a whole mix of emotions. It’s often referred to as the hardest thing a mother can go through following the death of a child. But we’re holding on to hope that we can safely bring Arthur’s little sister home.

I should also acknowledge that these words were mostly written by my incredible wife Jenna Swale , who has shown such courage and strength through the hardest of times. Thank you, Jenna, for putting into words what I struggle to talk about.