“I was diagnosed with PTSD months after our baby came home from NICU” - Duncan’s story #ByYourSide

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Today, on World Prematurity Day 2022, Duncan shares his experience of having a baby girl at 28 weeks. He wants to break down mental health stigmas, particularly amongst men, and describes how counselling has helped him talk about his neonatal journey.

Trigger warning: this story mentions suicide

My wife's waters broke at around 20 weeks in May 2020, the first Covid lockdown.

Thankfully we were sent home from hospital and she was put on bed rest to delay giving birth for as long as possible. She finally gave birth to our daughter Mia at 28 weeks in King’s College Hospital London, close to our home.

Mia was critically unwell for the first two weeks after she was born. She had a collapsed lung, sepsis and pulmonary hypertension, as well as other issues. There were a few times when we thought she was going to die.

Because of Covid-19, my wife and I experienced the unit individually. We weren’t allowed on the unit at the same time, so we would talk cross each other in the corridor, exchanging notes and tag teaming each other – one would be in hospital and the other would be home-schooling our daughter.

It was difficult to learn the NICU language and settle into the community of parents there. For the first few days I think we were in a bit of a daze and didn't really kind of take it all in as we were trying to come to terms with what was happening to our daughter.

Eventually we settled into a rhythm and we were able to be there for other parents on the unit and support each other.

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I was very lucky that my work told me to take as much time as I needed, so I was never under any pressure to go back, which allowed me to focus all my attention on Mia. All the nurses and staff at King’s were incredible, from the nurses to the doctors, to the consultants. I felt like we were in very safe hands.

Even when Mia was on a ventilator, the staff really encouraged me to do kangaroo care, feed her where possible or to change her nappy in amongst all the wires. It was really great to be a big part of her care, but very daunting – I thought, I'm not qualified to do this!

After two or three weeks, Mia started to get better. She moved away from being critical to a HDU and then SCBU.

The two months Mia spent on the neonatal unit wasn’t a linear journey, but an emotional rollercoaster. On the day that Mia was go due to go home, we had her in the car seat, when the eye doctor came to do a little test.

The doctor said that she was potentially going blind because of damage to her blood vessels, so she needed an operation. We had to lift her out of the car and take her back inside for another ten days; it was devastating.

Mia is doing brilliantly - she's so fun, tough as nails and she's stubborn. She’s just wonderful.

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I didn't really know what the NICU was before I experienced it, and I'm very sort of fond of the place now. I guess you go into survival mode to get through it.

The NICU has had long term effects on me, and I was diagnosed PTSD in 2021.

Mia came home on oxygen and things started to get better, but after about three or four months, all this pressure caught up with me.

I started having some really bad episodes. If I heard a beep or the microwave go off for example, I would have a panic attack as it made me think of noises on the unit.

I was having nightmares on a nightly basis and would have fits of really extreme anger (and I’m quite a placid guy), so I knew something was wrong. I'm still struggling now, but counselling has really helped and I’m doing a lot better than I was.

At times I was suicidal at points and it was horrific. Through reading parent stories, I have realised just how many people are affected by their NICU experience; I don’t know how you couldn't be affected by it, even with the amazing outcome that we've had with Mia.

I am comfortable talking about our NICU experience now because of all the counselling I’ve had. I do try to talk about it openly with my friends, but a year ago I was never able to do that.

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Whilst people are talking about mental health more, it is still slightly taboo amongst men which needs to change. The counselling and support I have received since acknowledging I had a problem has been life-changing and helped me to understand why I was feeling this way and what I can do to try and get through it.

My wife struggled with depression, alongside feelings of loneliness and guilt. She felt responsible, like it was her fault that Mia was unwell, while also grieving the lost time with her. The beautiful first weeks of having a baby, the cuddles – it was taken away from her.

I think the best thing friends and family can do for parents going through a neonatal experience is acknowledge the pain that parents are going through because there is nothing you can say to comfort them.

We’re so lucky that Mia is doing wonderfully – she reminds us that it was all worth it.