How I would absolutely love to go on holiday in the sunshine with my family, to feel that holiday sun to sit on the beach but when you have a baby with a congenital heart defect, life isn’t that simple.
Twice I’ve had to ring Alder Hey, to speak with a Cardiac Liason Nurse for advice of what to do with my baby. It feels crazy to be asking someone else if I’m ok to do certain things with my own son
My first call was for their advice around child care for Azariah once my maternity leave is over, the safest place for him to be cared for and this call was to ask for advice on taking Azariah on a holiday overseas. Basically it’s not that simple & lots to think about.
Some travel insurance companies, if willing to insure him, may request a “fit to fly” letter which our cardiologist would need to do. However, if she didn’t think the planned holiday was a good idea, she doesn’t have to write that letter – understandably.
I also found out that they can do a ‘flight test’ at Alder Hey, to see what being on a plane would do to his oxygen saturations. Because this is a big factor, if his sats are too low he could potentially end up needing oxygen on the plane!
The nurse advised us not to make any plans until the cardiologist has confirmed its OK. She reassured that ultimately they can’t tell us what to do with our son but if the need for surgery arose sooner than expected, our plans could be undone.
So much of our life is controlled by this. Simple things that others may take for granted, for us, they are much more complicated. Azariah’s health & safety comes first, sacrifices have to be made. This is reality for us, so we adapt, look at other options.
We’ve met others, since being on this journey, that even the thought of a holiday is so far off that we don’t take for granted the fact that we are even able to think about going away anywhere.
A bible verse that encourages us to learn to be content in our circumstances comes to my mind.
“Not that I was ever in need, for I have learned how to be content with whatever I havPhilippians 4:11
There is no point fighting & wishing things could be different, for right now, this is our circumstance that cannot be changed by anything we do.
Of course we can holiday in the UK, but our reality is that the option of an overseas holiday is much more complicated & isn’t really an option right now. Anyone with a UK holiday home on offer, let me know!
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