Wednesday, 14 February 2018

How having a CHD effects my girls lives.... #CHDAwareness

It is Congenital Heart Defect Awareness Week! Both of my girls have heart defects and so do I. I told our story a good few years ago....Part one and Part two. I am sharing some posts about Congenital Heart Defect's (CHD's). 

We discovered Ellie had a heart defect in the February and Becky a couple of months later.....By the end of August they had, had their heart surgeries and were mostly fixed. They are still left with leaking valves but it doesn't affect their day to day lives. Well until I think about it....


The cold.
Becky really feels the cold.....More than the average person. She rarely wears just a t-shirt even in the summer. It has to be really hot for her to lose the hoodie or cardigan. In the winter I feel so sorry for her....Some evenings she will come home from school and her lips will have a blue tinge. It easily takes her a good couple of hours to warm up....

The sweating.
One of Ellie's main symptoms of her heart defect was sweating...She would be dripping with sweat even on the coldest of days...Since having her surgery she still sweats excessively but only at the correct times....No more sweating just sitting around on a cold day but will sweat buckets running around on a hot day.....More than the average child....

Missing School.
I think there has been one year in my girls school lives where they have had full attendance at school....Before Becky had her heart surgery she would catch everything bug or cold going....Since her surgery she has been pretty good at not catching things. Since the girls were diagnosed they had yearly checks and it's only the last 4 years where they have gone to 18 months/2 years...

The girls have to have the full day off school because of where the hospital is. Up until last year the cardiac clinic was always on an afternoon....It takes us 2 hours to get there so it wasn't a rush. Last year the clinic was moved to the morning and our appointment was at 10am. We left the house at half past 7 in the morning and were still 5 minutes late for our appointment.....It was nearly midday by the time we had finished at the hospital so even if we rushed the girls back to school they still wouldn't get there until after 2pm. What's the point....

Their Scars.
Both of my girls have scars down the middle of their chests where they were cut open and then on either side of their abdomens where there were drains to take the blood away....The scars a constant reminder of what they went through and how far they have came...Becky is paranoid about hers and keeps it well hidden but Ellie's goes a little further up her chest and is harder is to hide. She does not care though. She wears it like a badge of honour and I always remember a few years ago when one child questioned her scar and she went off on one telling them all about her surgery in graphic detail. I think she may have slightly exaggerated the amount of blood and the stitches. lol 

Medical history.
I always find it funny when someone asks for my girls medical histories....It always seems to result in someone saying "Oh my god!" or something along those lines. It's wrong but seeing their faces does amuse me...

Being honest.
I have always been honest with my girls about their heart conditions. Well to an extent. I never told them that their was a small chance they could die during surgery but since then I have been truthful....They know their hearts were fixed but they will need surgery in the future....

Future surgery.
My girls will need surgery in the future to fix their leaky valves.....We are not sure when but it is looking to be in about 20 years. They will be adults so it will be out of my hands but it won't stop me worrying......Worst case scenario is that their hearts will swell, get damaged and they need a transplant....That is the worst of the worst though. We are just looking at new heart valves being put in......

4 comments :

  1. Oh my word! You and your girls are so brave and I think it's really great that you're sharing your story and how it affects you and your family x

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  2. Jessica is like Becky and also really feels the cold. She also misses school more because illnesses hit her hard and a hospital appointment can knock out the whole school day. Fingers crossed that it will be a long time before your girls need another surgery x

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  3. Sorry to read that the girls have been through a lot with their hearts and you yourself too. Reading this reminded me of Jessica Louise daughter. So it's lovely to see she's written something above. #mmbc

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  4. Wow... It must have been tough when they went through surgery. Our son has had minor surgery (dental) and that was enough for me to almost worry myself to pieces. So good to hear that you're all ok for now, and that it's looking good for the future too x
    #MMBC

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