Open Heart Story…2 years on

Two years ago this evening, my wife and I spent time together with our then 10 week old son in his hospital ward room, we’d bathed him in the bath on wheels thing that I’d dragged along from a room on the ward filled with a few similar clunky plastic implements. Wheeling it along the corridors of the cardiac ward past rooms of other children and their parents on different stages of a similar journey. I can still hear the sounds, the bleeping of machines, the contrast of cries of pain and giggles of joy, the chatter of nurses and visiting parents. The sights will also never leave me, the harsh plastics of a modern hospital, the kind eyes of the nursing staff and the bandages and machines surrounding many of the patients.

I remember staring at his chest, unspoiled, smooth and blemish free and recoiled in terror and helplessness as the realisation set in, perhaps what I’d been partly in denial up until this point, as to what this tiny creature would have to endure the following day. Open heart surgery, 10 weeks old. There was only space for one of us to stay with him that night in the room and I was never going to deny his mother that right, so I stayed as late as I could before tenderly rubbing my nose against his nose and gently kissing him on the forehead. Then began the seemingly eternal 10 minute walk back to the Ronald McDonald House facility for parents with critically ill children for a less than restful nights sleep. Indeed, unable to sleep at all, I resorted to distracting myself by vacantly watching old episodes of Star Trek the Next Generation on Netflix until eventually drifting off for maybe, an hour or two.

Fi had the agonising job of denying a hungry baby milk that night. One of the little hidden horrors of this whole process, is of course that any patient about to undergo anaesthesia has to be nil by mouth for a while before hand. We were of course new parents, so were getting used to the nightly ritual of getting up to give him his bottle a few times each night, this time the cries would still come but couldn’t be comforted with a reassuring bottle.

He was taken into theatre on the morning of August 30th 2016 to have open heart surgery. I have no memory of that morning, or if I do it’s deeply suppressed due to the trauma of it all. I did briefly see him that morning I think, I can vaguely recall him being more settled than I expected for the lack of milk, only one of us was allowed to accompany him to the doors of the operating theatre and again I was never going to deny his mother that right. I know how gut wrenchingly hard it must have been for Fi to watch him being wheeled through those double doors.

We were joined by both our parents back at Ronald McDonald House, we are both lucky to have had such supportive parents who are also fantastic nana and grandad, granny and grandad to Cohen. In my parents case this was their first and at that point only grandchild. Again I have difficulty recalling any of the things we did that day, but I do recall that we did our best to keep our spirits high, despite the dreadful scenarios that whizz around in your head. In the afternoon I think we got a phone call from the ward to say that the operation had been successful and he was now in intensive care., although Fi’s recollection is that we had already made our way down. Either way, the six of us made our way back down to the hospital.

It’s an understatement to say that we were desperate to see him. We were only allowed to go in two at a time into the intensive care ward, Fi and I went in first and were confronted with the following, which is an image that will never leave me and of which still causes me to tear up whenever I view it:

It may sound ridiculous but one of the main things I was concerned about was how bad the scar would be, so was relieved to see that it didn’t protrude from under the skin coloured tape that you see in the video above. Fi wouldn’t leave his side so I wandered back along the corridor to the anxiously waiting grandparents and managing a smile said something along the lines of “He’s ok” before leading the grandparents along one at a time to see him. I vaguely remember my mum saying something along the lines of, “he still looks like a wee boy” which goes to show how strong our fears were for how things might have worked out.

After a few days in intensive care, where a myriad of machines monitored all of his vital signs and in which there were a few scares as various measurements spiked or fell before stabilising. He was discharged back on to the ward. Another video that means a lot to us from that period is below, his first post op giggle. Cohen had been smiling and giggling from a very early age, his first proper smile was after just 4 weeks for example and one our fears was that we didn’t know how long it would take him to do so again. Therefore this albeit pained giggle meant so much to us.

This is the first time since those few weeks, that I’ve felt properly able to write about it. Last year I wrote a brief blog to mark the first anniversary and reading it back I can feel how raw it still felt. I guess the gravity of what we went through has sunk in during subsequent visits to friends and relatives who have since had children and seeing how tiny they are at 10 weeks old.

We are lucky though in that Cohen made a full recovery and is absolutely full of life and energy, is ridiculously tall relative to his peers and is as bright as a button. However we are all too aware from our time spent in the hospital that others are much less fortunate. There were parents we met whose children are constantly in and out of hospital constantly reliving our experience or worse. We met mums and dads who had been staying in the Ronald McDonald house for months, lives put on hold whilst they stay as close as possible to support their child as best as they can. In Ronald McDonald house there are pictures pinned to the wall by parents of their children, many of whom recovered like Cohen, others who sadly passed away.

One of the charities who made our stay in hospital just a bit more bearable was the Zak Scott Braveheart Foundation who support families on the cardiology ward in memory of their son Zak who sadly passed away after multiple operations aged just 14 in 2011.

I don’t normally ask people to do this with my blogs, but I would really appreciate if those reading this share it on your social media accounts to raise awareness. I’ve also set up a Justgiving page at the link below to mark the 2nd anniversary of Cohen’s surgery by aiming to raise £100 for the Zak Scott Braveheart foundation, any donations that you can give would be greatly appreciated.

https://www.justgiving.com/fundraising/martin-taylor47

Martin