I walked into the bathroom, locked the door and cried. Was this all about to happen again? Why us? What had we done to deserve this? These and many more questions flooded my mind.
Two minutes beforehand, Professor Mark Johnson had told us that our baby was sick, that my wife was at risk and that she needed to have an emergency c-section immediately, meaning our son would be born at only 29 weeks and most likely with a severe infection.
Only 3 years previously we had lost our first baby at 21 weeks and even though we had had a beautiful, wonderful, amazing little boy since then, the wounds were still deep and raw, and all of the emotions came straight back as Mark delivered his opinion.
I’ll keep the rest of it short, but it went something like this…
Head to surgery in a daze, feeling disconnected from the people and world around you.
Stay strong for your amazing wife who is staring down the barrel of losing a second baby having done everything in her power to help get this one to full-term.
Watch your child being handed to the midwives, not breathing, to be resuscitated.
Take an enormous breath of joy as you hear your son cry for the first time before accompanying him to NICU where he would spend the next 6 weeks of his life – as Mark had predicted he had been born with a horrible infection that was threatening his life.
That’s the abridged version but that pretty much sums it up.
I instinctively knew what I had to do next.
“It was my job to help my little boy fight back and to get through this.”
He couldn’t understand me but he would know I was there and that I had his back.
I resolved to ask every question, to challenge the doctors and nurses if I didn’t agree with a course of action and to generally be his voice – the medical teams are awesome, don’t get me wrong, but they are looking after lots of sick children and so it was my job to ensure that he had a loud voice, even if that ended up with me being disliked.
If I had to stay up all night by his side, then I would and for many nights I stayed with him until 3 am because I wanted him to know that he was not alone – why am I telling you this? Because if you are going through this then you will know this feeling and I would say listen to it. Never doubt your instinct. Never leave any stone unturned in your relentless pursuit of their recovery.
I prayed. I prayed to every God, to the spirits of my ancestors, to the universe. I asked my friends and family to pray, and I sent pictures to them so they could focus their prayers on him. I’m not religious, but when I say leave no stone unturned, I mean it and, in this case, I had once read about a study that had shown a positive result from focused prayer – so we tried that too.
I found that I became obsessed by the machines and stats. I started to get a grasp of some of the medical challenges he was facing and the key indicators he needed to achieve in order to show progress, I obsessed over any metric I could get my hands on. My wife did too, even though she was suffering from the side effects of a horrific operation and the emotional impact of the situation we were in. We both became adept at reading the big screen showing his statistics that pulsed away above his bed.
“It was doing all these things that gave us hope.“
If we had sat around at the mercy of fate, then it would have felt a lot worse. Did praying help? We don’t know. Did obsessing over CRP levels (an indicator of infection) help? No, because the doctors had that under control. Did holding his hand and supporting him as he carried out his lonely battle locked in the prison of his incubator help? Probably. We did whatever we could, just like any parent would.
So, what happened next? Again, the short version…
We spent 10 days in NICU at Chelsea and Westminster Hospital – the doctors hit the infection hard and early with exactly the right drug – this saved his life. He started to get better quickly with his CRP levels dropping quickly.
We then moved to St Mary’s Hospital where he spent 4 weeks. The team here were amazing too. He was discharged in record time with the nurses and doctors telling us that he was a miracle baby (note the proud tone in my voice).
So, the good part? Rafi turned one in February 2022 and has just started standing up and crawling! He has no side effects and is funny, naughty, loud and generally a little legend. We are definitely lenient on him because of what he has been through, and we don’t care! He’s a fighter and deserves to be spoilt.
To anyone who is going through this now and stumbles across this article it’s OK to be scared, to be jealous of other parents whose baby leaves before yours, to feel despair, to be able to still laugh at something, to go to the gym and to watch a film. You can only be the best version of yourself in order to help your baby if you have a strong mental approach. As in all aspects it’s about balance.
The clock will tick slowly and the days will pass by like treacle but let me reassure you, you will get through this and those minutes, become hours, become days, become weeks become months, and at some point, you get the message that it’s time to go home. And that’s when the real fun starts!