One of the things I find challenging as a heart parent is dealing with people’s assumptions about my heart child. While many of them are well-meaning, they can be frustrating. Here are some of the assumptions that we 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. Many people are unaware that there are lots of different types of congenital heart defect (CHD). Some of these 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. 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 assumption when looking at preschools for Jessica. One preschool reassured me that they would be fine with coping with Jessica’s needs as they already had another heart child there. I am sure this was meant to be reassuring. However, 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 and the fact that Jessica gets breathless much more easily than other toddlers. They do often notice her rosy cheeks though and assume they are 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. We have also 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. Heart defects are not generally something children “grow out of”. CHD is a lifelong condition, requiring regular check-ups, surgery and medication.
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!