One of the things I find slightly challenging as a heart parent is dealing with people’s assumptions. Here are some of the ones I have encountered:
1) “Oh don’t worry, my friend’s brother had a hole in their heart and he was fine so your little one will be too.”
I first encountered this one within days of Jessica’s diagnosis. Like most of the assumptions, it’s well meaning but many people are unaware that there are many, many different types of congenital heart defects and some are more complex than others. The prognosis varies depending on the child’s particular anatomy. Jessica’s particular anatomy was quite complex – she has hypoplastic left heart syndrome, which basically means that the left side of her heart is very underdeveloped. She also had what is known as a restrictive atrial septum which meant that her prognosis was quite poor and it was thought initially that she wouldn’t be suitable for surgery. Thankfully we were offered fetal surgery to enlarge the hole in her atrial septum and improve the odds of her being able to survive surgery.
I also heard a variant on this when looking at pre-schools when I was reassured by one that they would be fine with coping with Jessica’s needs as they already had another heart child attending that particular pre-school. I am sure this was meant to be reassuring but it made me worry that they would assume the two children had the same needs when they could have two very different heart conditions.
2) “So she’s fixed now?”
The type of surgery that Jessica has had so far, and will need in the future, is what is known as “palliative” surgery. Her anatomy cannot be corrected – the surgery will “re-plumb” her heart in order to improve her heart function and prolong her life but it will not “fix” it.
3)”Well, she seems completely healthy now.”
This is a bit similar to assuming that Jessica is “fixed”. She is well, yes, but not “completely healthy”. Most people don’t notice the slightly purple lips, the fact that Jessica gets breathless much more easily than other toddlers although they do often notice her rosy cheeks (which they used to assume were due to teething). I am very thankful that Jessica is as healthy as she is – we have been lucky in that she is rarely ill. That said, illnesses do hit her a little harder – the one time she had a sick bug, we ended up in hospital for three days and we have had a couple of hospital stays with chest infections but otherwise she has been well. She has medication four times a day and regular check-ups with the community nurse, paediatrician and cardiologist.
4) “Oh I’m sure she’ll grow out of it as she gets bigger.”
This is probably the strangest assumption anyone has ever made and was said by a fellow mum in the playground one day. I can only assume that this particular mum may have known someone who had a very small hole in the heart that closed up by itself but heart defects are not generally something children “grow out of”.
On the plus side though, challenging these assumptions does help to raise awareness of congenital heart defects even if it does feel a little wearing at times!