Friday, 6 February 2015

CHD Awareness Week & Tiny Tickers.... #CHDAwareness #CHD #WearItRed



CHD stands for Congenital Heart Defect and is an abnormality of the heart which occurs soon after conception and often before the mother is aware that she is pregnant.

  • One child in every 100 is born with a heart defect.
  • There are 35+ known CHD’s.
  • Congenital Heart Defects, also known as CHD’s are the #1 birth defect in UK affecting 8/1000 live births this does not count all the children lost in pregnancy to CHD’s.
  • CHD’s are the #1 cause of DEATH from a birth defect, killing twice as many children as cancer every year.
  • CHD’s can not be cured, the heart must be monitored throughout life. Most will need multiple open heart surgeries, 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.
  • It has been estimated that there are currently 250,000 adults with CHD in the UK.
  • 90% of heart-children now live to see their 20th birthday – 20 years ago, that wouldn’t have been the case!

Various procedures are used to help repair the heart to prevent the need for surgery but not enough is being done in the UK to raise awareness of heart problems. Awareness is the key for hope and survival for sufferers and their families as it is often a silent killer.
 
Myself and both of my girls have heart defects and both my girls had open heart surgery in 2009. You can read our story....Part One and Part Two.

Our heart defects were not picked up during the routine scans.....If it wasn't for Ellie jamming her fingers in a door and the anesthetist picking up on the heart murmur who knows what would of happened.....My girls would not have lived past their late teens that's for sure!!  

Tiny Tickers is a small national charity that aims to improve the detection, care and treatment of congenital heart disease (CHD) in babies. 

They were founded in 1999 by a world-renowned fetal cardiologist when she realised that many of the babies she was caring for could have been helped earlier.

When CHD is detected during pregnancy, babies get treatment from the first possible moment – and early detection is shown to greatly improve their chance of survival and long-term quality of life, reducing the risk of heart failure and, therefore, brain damage.

Early detection also means that parents-to-be can get the support they need to prepare them for the future meaning fewer dangerous and costly emergency admissions to hospital, fewer cancelled planned operations because of emergency admissions, and less strain on emergency transport services.

Tiny Tickers’ core charitable activity is the training of sonographers and health professionals to detect congenital heart defects (CHD) during pregnancy scans. Tiny Tickers is the only UK charity dedicated to improving national detection rates for CHD. They receive no statutory funding and largely rely on donations from the public to fund our running costs and projects. Training of this type is not provided or required to be provided within the NHS....Which personally I find ridiculous!


Brilliant blog posts on HonestMum.com

11 comments :

  1. What a great sounding cause. I am reviewing my charity giving in march and am always looking for different ones. This looks great. i'll keep it in mind!!

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    1. Isn't it just....It's a new charity to me too.

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  2. You must be so thankful for that door! and the doctor who found the murmur! Well done for raising awareness for such an important campaign. x

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    1. Thank you! I am....Crazy to say but jamming her fingers in a door saved her and her sisters lives x

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  3. I've just read this and the posts about your girl's operations. I cannot imagine how awful it must have been to have both of them in hospital (but at least, as you say, the heart defects were picked up). I'm glad things have turned out well for you all.

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  4. Excellent Post on raising awareness for such an important Cause Kim.
    I have just read your previous posts, and thank god your girl's defects were picked up early, and that you have remained stable.
    I am in the process of writing a journal of our journey 'living with a Heart transplant', i think it helps people who have been through/going through the same thing, glad you are all fit and well now. x

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    1. Thank you!
      Good on you! Yes reading other peoples stories certainly helped me....

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  5. I had no idea so many children had congenital heart disease. We actually had our daughter heart checked after two of my husbands cousins died after doing gym at school....It turned out they both had undetected heart problems, although the problems were different.

    It's brilliant that you are raising awareness of this problem.

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  6. Scary stuff to think that you might easily not have known about your daughters heart problems. So much better to pick things up early and good that a charity is trying to improve this.

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  7. Great cause :) and close to my heart xx

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