Wednesday, 7 February 2018

The Facts! Congenital Heart Defect's. #CHDawareness

Today see's the start of 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. Over the next few days I will be sharing some posts about Congenital Heart Defect's (CHD's). Today I am starting with some facts and information!


Congenital Heart Defect's (CHD's) are the most common birth defect's in the UK! Thousands of babies are born with a heart problem each year! It affects up to 9 in every 1,000 babies born! CHD’s are the number one cause of death from a birth defect killing twice as many children as cancer every year! An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year.

Some congenital heart problems are now picked up when the mother has an ultrasound scan during pregnancy (usually at the 20-week scan) but sometimes they are not found until after the baby has been born. Some conditions may not be discovered until the child is older or even an adult. My girls were a year and a half old and 7 before their defects were discovered and that was only down to a fluke accident....

Common examples include holes in the inside walls of the heart and narrowed or leaky valves and in more severe forms of CHDs blood vessels or heart chambers may be missing, poorly formed, and/or in the wrong place!

My girls had holes in their hearts and since their surgery they have been left with leaking valves....

Many severe congenital heart defects will create signs or symptoms often soon after birth. Every child and condition is different but more common symptoms include extreme tiredness, poor feeding, excessive sweating, difficulty to gain weight, rapid heartbeat, breathing problems, chest pain and a blue tinge to the skin.

My girls really didn't show any of these to an excess.....Becky my teen was always thin but it was put down to that's how she was and my youngest sweat so much....Even on the coldest of days she would be dripping with sweat. We have since found out these symptoms were because of their heart defects....

Congenital Heart Defects are not always found during pregnancy or at birth, many are not found till childhood, adolescence, adulthood or after death when it is too late. 

Please if you have any doubt get a second opinion......See another doctor! My girls heart defects were not picked up. Even when Ellie was diagnosed and Becky had an unofficial check on her heart with a top specialist who picked up her heart defect we had to go to our local GP to get a referral. To do everything by the book. Our GP was still adamant there was nothing wrong with her....6 months later we were in the same doctors surgery having stitches removed from her open heart surgery...

Some children/people will need multiple open heart surgeries and some may even need a heart transplant. Babies born with CHD’s may need their first open heart surgery at just a few hours or days old or may even be operated on when they are still in the womb! 

Regular follow-up appointment are needed just to check on the heart, even if the patient has had successful surgery and is leading a very normal life....

My girls go for check up's every 18 months/two years. This won't change. They will have these appointments for the rest of their lives because of the way their hearts are. 

Just let it sink in that Congenital Heart Defect's (CHD's) are the most common birth defect's in the UK! If you don't know someone with one eventually you probably will....



16 comments :

  1. I am more aware of this condition since started reading your blog. What you are doing for CHD awareness is amazing!

    ReplyDelete
  2. Great post lovely and so nice that you share your expertise and experience's with everyone, it's so vital to talk about this and make people more aware. Thanks for sharing with #BloggersBests

    ReplyDelete
  3. I've learnt so much from this post. I am pinning this to share the awareness.

    #BloggersBest

    ReplyDelete
  4. I'm glad I read this post. I took my son (18 months old now) to the doctor about 6 months ago. I took him for excessive sweating. He only sweats from his hands and feet and has done so since he was born. He sweats so much that he leaves little puddles. I also took him to the doctor about his limbs randomly turning blue. His arm has done it a few times and his ear did it once. The doctor just told me if it was anything wrong with his heart, he would pick it up on his stethoscope. This post has made me wonder if I should push for a second opinion. There were heart conditions on the paternal side of his family but none of them want to tell me the exact names of the conditions. I will keep pushing for him to see someone xx

    ReplyDelete
    Replies
    1. Oh gosh! Knowing what I know now, I would push for a 2nd opinion. Our GP checked my girls several times before their diagnosis and with my eldest a few months before her surgery and picked up nothing. I don't want to worry you but problems can be missed. I really hope it turns out to be nothing xxx

      Delete
  5. Well done for spreading awareness Kim, there are so many things I have learned from this post. I know my kids are okay as we have no history or symptoms, but Star has had several heart tests because her condition can also cause heart problems. It sounds like such an awful thing to go through and I didn't realise it was so common. I really hope your girls have no further problems, I bet it's something you always have to be wary of. xx

    ReplyDelete
  6. This is really good in raising awareness and giving out really important information, thank you for sharing X #bloggersbest

    ReplyDelete
  7. I had no idea it was so common. I knew it affected a lot of babies but not to this extent. Well dome for raising awareness on this. #pocolo

    ReplyDelete
  8. Great post - I didn't know it was so common. It's great that you can offer advice and support via your blog #bloggersbest

    ReplyDelete
  9. You are doing great in raising awareness Kim :) #PoCoLo

    ReplyDelete
  10. I didn't know much about this at all so your campaign is working! I do know a friend of a friend whose little girl was born with a heart defct and had multiple surgeries when she was tiny, but all seems ok now.

    And congrats, because someone loved this post so much they added it to the #BlogCrush linky! Feel free to collect your 'I've been featured' badge :)

    ReplyDelete
  11. I had no idea it was so common! Thank goodness you got a diagnosis for your girls and they are okay. xx
    Thanks for linking to #pocolo

    ReplyDelete
  12. I didn't realise it was so common and I bet you're right we all know someone with this without realising. Thanks for sharing with #PoCoLo

    ReplyDelete