“The biggest thing that helped me as a dad was to talk to other dads” - Ethan’s story

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Ethan shares his experience of losing his baby, Oliver, at 145 days old. He offers advice for parents and particularly other Dads who may have lost a baby or have had a baby in NICU.

My son Oliver was born on 26 March 2020. He was born breech at 23 weeks weighing 610 grams. This was three days into the first national lockdown in the UK because of COVID-19. My partner at the time had gone to hospital for a check-up as she was experiencing pain and bleeding. Upon inspection, they found she was already 4cm dilated and had a pre-rupture of the membrane.

At the time, she was just over five months pregnant.

Oliver was given a 3% chance of survival, and it was left to the doctors to decide whether they felt he should be incubated or not – they decided that they would go ahead and do this.

From this point, we took it hour by hour, night by night and day by day. For the first two weeks, Oliver seemed to be making progress and doing well and there were no major concerns other than the warning that complications could arise due to being premature. We then faced a major setback - his bowel had ruptured (NEC- necrotising enterocolitis).

This led to Oliver undergoing life-saving surgery at Brighton hospital despite the odds being stacked against him. The operation was a success, and he spent a small majority of his life in Brighton.

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After this point, Oliver required further surgeries which landed him in a London hospital. After these surgeries, Oliver seemed to be on the up and this led to him making front page news on the Sun newspaper with hopes of him coming home.

Unfortunately, things took a turn for the worst and Oliver entered palliative care. On 18 August 2020, Oliver peacefully passed away in mine and his Mum’s arms in the NICU unit. He was 145 days old.

For me, this experience was traumatic, mentally straining and the hardest thing I’ve ever gone through, however, I would not have changed my time with Oliver for anything. I felt so supported by the NHS staff, but I knew that there was a limit to what they could do – miracles are hard to come by.

As for any parent, the initial journey of pregnancy is daunting. I think from the first time on hearing you're expecting a baby, NICU doesn't even cross your mind.

I think there needs to be more openness regarding possible outcomes, especially within the first trimester as things can change very quickly as it did in my situation. I would have these as mandatory leaflets in a pregnancy pack, either from the midwife or other. Although it still won't prepare you mentally, it will still give you a realistic insight into what you could expect, with the hope you never have to experience it.

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Fathers suffer as much as mothers. My advice for fathers though would be, to learn about the NICU when you’re there. What I mean by this is, there is so much terminology used it's confusing to comprehend. Just stop and ask questions, never be afraid to ask.

The sounds of the NICU are scary and there are lots of times you can find yourself alone next to an incubator worrying. The best advice given to me was by a nurse looking after my son and she said, "if we are not worrying, there isn't a need for you to worry" - this put me at so much ease.

The biggest thing that helped me as a dad was to talk to other dads. Even asking another dad next to me at his child's side, shall we go get a coffee. You may not think it, but he's having the same thoughts and worries you are having. So, if you know you need a break, or a time out, chances are he does to.

I don't think it's realised just how lonely of a place it is, even though your surrounded by people. There's a stigma on fathers to be strong and return back to work, Be the bread winner I guess, but that's not how it should be.

I tell fathers all the time who I speak to, to just live in the moment. You can replace your job and having a reputation as a ‘strong alpha male’ isn’t worth more than spending time with your child. As much as the NICU staff are there for the children, they are also there for you.

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Keeping a diary and reading through my memories helped me grieve and led me to writing my blog – a Father’s story: NICU survivor, prematurity, loss and Covid. I would also advise people to keep everything; Oliver’s ECG wires, blood pressure sleeves and other bits have become some of my most treasured belongings. I also asked a nurse to monitor Oliver’s heart just before he passed, so then we all had a recording of his heartbeat. Life is precious and so are memories.

Openness is key too - you have to be transparent and open to asking for help, as much as accepting the help offered. Although every child is fighting a different fight, us parents are collectively hoping for the same outcome, and that's to bring our children home.

For some that's a reality, for others not so much, but by coming together and sharing our stories, good or bad, we make it possible to help the parents who are just beginning their journey.

You can read more about Ethan’s story on his blog here

If you’ve experienced baby loss and need support, please reach out to our support team at hello@bliss.org.uk, or contact our friends at Sands