Jonathan's blog: Prem Pt 3 - How parents work with children in hospital

Our daughter Isabella was born in May 2019. She was due at the end of August. My previous two blogs charted how my wife and I struggled through the shock of having a very premature baby, before we went through an unimaginable crisis in July of that year when Isabella became seriously sick.

Indeed, by the time we’d reached the month of August itself we were exhausted. Utterly drained, physically and emotionally, we’d been through countless crises, some nothing short of critical. Psychologists at the hospital that were overseeing our mental health told us to expect to encounter some form of posttraumatic stress disorder (PTSD). But we kept pushing, kept our hopes alive, kept trying to inject some form of colour back into our faces and just took each day as it comes.

Every day was a fresh battle, a test of wills, nerves and pure resilience, and all the while I had to go to work, too. To be honest, we impressed ourselves. It’s astonishing how strong you can be when you’re really put to the test. I never thought of myself as a tough person. I do now. That’s a testament to the positive effect a traumatic experience can have on a person. And indeed, the psychologists said we’d have equal chance of getting the opposite of PTSD – posttraumatic growth.

I guess perhaps the point of this blog is that these kinds of experiences give you a renewed appreciation for the fact that everyone is fighting a silent war in some way at some point. I mean, my wife and I were going through a year of hell. And I can tell you now that we were around parents going through even darker times, hard though that might be to imagine.

For me, this was a big penny-drop.

So maybe your immediate colleague’s demeanour has changed recently. Their attitude, their workload capacity, anything different? Before you jump to conclusions it would behove us all to just remember, they might be going through some stuff. It’s probably hidden behind a smile. I have the benefit of wearing my heart on my sleeve. It’s in my nature. I don’t bottle up pressure; I really can’t help but let it out, whether you want to hear about it or not you’re going to hear it. But not everyone is like me, especially men. It’s good to keep all this in mind if you see someone struggling and you can’t put your finger on why.

We approached Isabella’s due date, which if you’re a premature case is broadly when you can expect to be discharged. Not so for us. We knew that there were still a couple of months to go – Isabella had undergone lifesaving surgery in July, which had to be performed by specialists in London’s St Thomas’s Hospital. It was a two-part surgery; the second part – basically where they put everything back together again – would not be able to be performed until Isabella was recovered enough to handle it, and that would be a while yet. As such we had become semi-permanent residents of London’s South Bank. For all sorts of reasons it was too far and cripplingly stressful to commute back and forth between our house and the hospital, not least the hour and 20-minute trip; as such we were living remotely at the wonderful Ronald McDonald House Charity nearby.

It was unsettling, being away from home. You did what you could to stay busy, outside of work. Being near Parliament Square and right bang in the midst of the Brexit crisis, some days we’d shoot over Westminster Bridge to see what was going on. Some kind of rally was always happening. Quick protest, then it was back to the hospital grind.

Meanwhile in the hospital and the Ronald McDonald House we made friends with many other families going through not only prematurity hell, but other terrifying ailments too – the house accommodated patients of the world-famous Evelina Children’s Hospital, which is part of St Thomas’s.

Our new neonatal friends too had to work around their situation, juggling a hospital-work-life balance in the best way they could. Some were self-employed and while I had the privilege of a very generous employer, for these guys every precious hour in NICU (the neonatal intensive care unit) is also a precious hour not earning, so one can imagine the extra burden this presented. But the stress never showed. I was sitting and having lunch one day when one parent just casually dropped into the conversation that their child was undergoing major surgery.

“I’m sorry I think I misheard,” I said. “Did I understand you correctly, your child is having this surgery, right now? Like, now, now?”

“Yep,” she replied. “I’ve been trying to keep my mind off it with this lasagne. What else can you do? They should be done in a few hours. Fingers crossed, touch wood.”

Quite. What else can you do? You persevere. Always look on the bright side of life. Both parents were stoic and sunny, though underneath you knew the turmoil was real. Incidentally you’ll be glad to know their surgery, like ours, was a success.

But that was all normal. With fingers literally crossed, knocking on the wooden table was par for the course for everybody in the Ronald McDonald House dining room. Like a call sign. What I should say here is that these support networks of people going through a similar thing as you are crucial. No one understands the NICU journey unless you’ve been through it. No disrespect meant here at all, it’s just impossible to truly fathom. I didn’t know a single thing about it until it happened to me.

The other silver lining from all of this, that I mentioned briefly in the first part of this series of blogs, was the boundlessness of human kindness you experience. My employers were exceptional, for one.

Then there are of course the hospital staff – the nurses and doctors displaying mind boggling levels of expertise, but also just unbridled compassion and appreciation for what you were going through – this otherworldly situation that all of us had been crudely dumped in.

Our friends came through in ways we couldn’t have even dreamt of. Being in this situation, the people around you feel helpless. They care about you so deeply but there’s little they can do to help really. I mean, there’s very little that YOU, yourself, can do to help yourself, beyond just being there at the cot side. It’s just you and your partner in your lonely little ward, watching over your child and coming to terms with just how crushingly unfair it is this tiny new human has to go through this.

And yet, at perhaps the point where we feeling most isolated, we received a group message out of the blue. All our friends had clubbed together and bought us dinner at a fine dining restaurant near the hospital.

“We wanted to give you something, anything, to help,” they said. “So, we thought we’d give you a bit of luxury. And a night off.”

We burst into tears. What could we say but a million thank you's? They then would come and meet us every weekend and we’d have a drink on the South Bank. And I guess if you’re going to be effectively under house arrest in London in the summer then this is the place to do it.

But you need that constant attention – that constant support. I would say this to employers especially whose employees are going through anything even remotely like this: during a crisis, people are there for you at the beginning. But when you’ve been there for five months that understanding begins to wane. We were lucky to have to family and friends who continued to be there but it wasn’t necessarily so for many that we met. When the shock has subsided and the drama has been heard, people can assume you’re OK because they haven’t heard much new news. It’s here, when you’re at your lowest ebb, that you really need the most support; when you’re still in the exact same helpless position you were in months ago people need that level of understanding to keep going.

Some people we met had very sick children and their need was even more intense than ours to be by the bedside literally the whole time. But still, those bills need to be paid, and that mind is in a thousand different places.

To reiterate my point, please bear this in mind the next time you may see a staff member in crisis.

If you gave them your time and your compassion at the beginning, make sure you maintain it to the end. If someone is going through some stuff, it’s a marathon, not a sprint.

Jonathan is the proud father to a beautiful baby girl, a pretermer, and husband to the strongest wife and mother in the world. He is digital marketing manager for a London City financial services firm.

Category: A Cityfather's Diary

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