23 June 2016

A cardiac update


So I posted on Tuesday night on Instagram about our upcoming cardiac clinic appointment that we had yesterday. I wrote last week about how I tend not to let myself think about that side of Rohan's health, as frankly it just scares me a little bit. In one way I know we've been incredibly lucky that he's so far not required surgery, as that is what we thought would happen in the first week of his life. Obviously the longer we wait and bigger and stronger he will be which all helps with the risk factors of surgery. But it's hard to feel thankful too much really, as the possibility is still very real.

When we were in hospital we were on the cardiac ward, waiting to see what would happen to his heart as time went on. We saw so many people go through, before and after surgery so I can sort of imagine what it feels like to be in that position. We've only ever had to though hand Rohan over to someone once where there could have been a risk to him. That was just for an MRI, under general anaesthetic and that was heartbreaking enough. I didn't want to just hand my baby over knowing that I was putting him at risk of dying. Sorry if that's a bit much, but that is what it was. Those were the words we had to hear. So to think about doing so for heart surgery just doesn't bear thinking about for now, I try not and let myself imagine being in that situation yet.

So back to yesterday. After our last cardiac appointment a few months ago we were awaiting news on what the surgeons and other consultants thought would be the best plan of action. They have a big meeting once a week to discuss cases, and our consultant was going to present Rohan's case. We hadn't heard anything back to I was anxious to hear the result of what they said. There were a few issues that they were discussing and perhaps a few options for surgery. One was that his Patent arterial duct was still open and they needed to decide whether that was putting more pressure on his heart. So there would be an option to perhaps to keyhole surgery just to close that. But then they also wanted to check to see whether the fact that his aortic arch is a peculiar shape, but hadn't actually narrowed into a full coarctation like they thought, would need fixing too whilst they were closing the duct. This would mean bigger surgery. But thankfully, it seems as though they are happy to wait for now. They agreed that neither the duct being open or the 'tortuous' arch were causing too much detrimental effect on the heart to be operated on just yet, and thought that the benefit of waiting would outweigh the risks of surgery. I think they also decided that they wouldn't do surgery just to close the duct, as it might not be as simple with the arch in the way.

Rohan had another echo of his heart yesterday, as well as an ECG and all looked ok, other than a slight thickening of the pumping chamber, meaning that his heart is perhaps working harder than it should because the blood doesn't flow as easily down his arch to his lower body. His blood pressure was also a little higher, both of which can be indicators that he may need the surgery at some point. Our consultant said that her gut feeling was that he would, but it is very much a wait and see how he grows and gets on. We have another wait of about 4 months in which she will be presenting his case once more with the developments, and if they then decide that yes they do want to operate it could be another 3 to 4 months after that. So we are potentially looking at when Rohan is a year old, and things can still change in that time.

So we are fairly happy with the outcome, things are delayed a little bit more and Rohan has time to grow and get stronger.

I just also wanted to say thank you to all of you who left a comment or a message about it, it really does make it easier to deal with and I really don't know where I'd be without that support! 

2 comments :

  1. I am so pleased things went well. It's great that Rohan has time to grow and become stronger.
    Both my girls have had open heart surgery and it is so hard to hand them over. It is heartbreaking but if/when the time comes for surgery just remind yourself it is for the best. I had to keep telling myself that. Sending love and hugs....

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  2. So happy to hear you got pretty good news!

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