Challenging the assumptions about my heart child

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.

 

Jessica sitting on Daddy's lap with her chest covered in ECG stickers and leads - "Challenging the assumptions about my heart child"

 

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.

 

A smiley Jessica with her hands either side of her face

 

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!

Follow:

8 Comments

  1. Kim Carberry
    August 17, 2014 / 10:43 pm

    So interesting to read…..People do assume a lot about heart problems….
    I say the holes in my girls heart were fixed….They were but that caused leaky valves which are not. I also say my girls are healthy but my eldest gets blue lips now and again and my youngest is still so sweaty but we can live with that. We cope and live with it but they are not fixed….

    • August 18, 2014 / 12:56 pm

      I think some conditions are more “fixable” than others – people don’t realise what a range of different heart conditions there are though. I think all heart conditions are scary for the parents who have to see their children go through surgery though even if they are potentially “fixable”. So glad that your girls are doing so well now and hopefully they will not need any more surgery for a very long time. Thank you so much for joining in with my linky 🙂

  2. December 16, 2014 / 2:52 pm

    Oh dear lord. People actually say this stuff? I won’t bore you with an extended version of my background, but in brief, I was a cardiac nurse specialist up until last year, where I resigned after having my second child (no flexible hours in the NHS). So I have an excellent understanding of heart anatomy, function, prognosis etc. I find it offensive (for you) that you should have to deal with these nonsense comments/statements. And I feel flabbergasted that anyone would be that ignorant to make these assumptions. I’m so sorry you have to deal with this nonsense, and I wish you and your family the very best. Fiona x

    • Louise
      Author
      December 17, 2014 / 3:58 pm

      Thanks Fiona – some of the comments are just due to a lack of awareness that there is such a broad spectrum of heart defects although the one about Jessica growing out of it still leaves me a bit flabbergasted now.

  3. December 16, 2014 / 8:42 pm

    You’re right Louise, I had no idea that there were so many different kinds of heart condition and this was interesting to read. The only person I ever knew with a heart condition was one of my ex-husband’s friends who was simply known as ‘Bluey’ – you can guess why! Obviously I don’t know what kind of heart condition he had but I know they said he would die young. As far as I know he is still alive, in his forties with a child of his own but only through friends of friends on Facebook. This isn’t me doing a Number 1 on you (er.. maybe I should re-phrase that!!) – its simply my only reference point. I can imagine ignorant comments must get very wearing though but as you say, never a bad thing to put people right and raise awareness. Xx #thetruthabout

    • Louise
      Author
      December 17, 2014 / 4:00 pm

      Thanks Sam – I do understand that most of the comments come from a lack of awareness and am usually quite patient with the comments I receive and try to use them to help raise awareness rather than getting frustrated. Glad that your ex-husband’s friend seems to be doing well.

  4. December 16, 2014 / 8:56 pm

    Conditions are so individual, and I think people really do not know and then make very wrong assumptions. Maybe you should print this blog out and hand it out! Really interesting post and a gorgeous picture of your daughter!! x
    #thetruthabout

    • Louise
      Author
      December 17, 2014 / 4:01 pm

      Now that’s an idea! I do sometimes try and raise awareness when on the receiving end of these kinds of comments although have to confess that sometimes I just smile and let it go as it can be easier. Hopefully by sharing this post, it will help raise awareness too!