Friday 7 February 2014

Congenital Heart Defect Awareness Week!

Today marks the start of Congenital Heart Defects Awareness Week which runs until the 14th of February!

 Both of my girls and myself have heart defects! You can read our stories which I blogged about last year...

Part One & Part Two...

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. The defects can range in severity from simple problems, such as “holes” between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves....

The condition can have a number of symptoms, including:

rapid heartbeat
rapid breathing
excessive sweating
extreme tiredness and fatigue
a blue tinge to the skin (cyanosis)
tiredness and rapid breathing when a baby is feeding 
These problems are sometimes noticeable soon after birth, although mild defects may not cause any problems until later in life.

Becky never showed any of the symptoms at all and the only sign Ellie showed was the excessive sweating......It was only picked up with Ellie when she was in hospital having surgery to fix a broken finger they noticed there was a problem....If not treated my girls heart defects would of killed them by the time they were teenagers....Their hearts would of just stopped beating one day....It is so scary thing to think about!!

The treatment for usually depends on the defect you or your child has....Mild defects, such as holes in the heart, often don't need to be treated, as they may improve on their own and may not cause any further problems.

If the defect is significant and is causing problems, surgery is usually required. Modern surgical techniques can often restore most or all of the heart's normal function, and nowadays about 80% of children with congenital heart disease will survive into adulthood.

One child in every 125 (8 per thousand) is born with a heart defect!!

CHD’s are the #1 cause of DEATH from a birth defect killing twice as many children as cancer every year.

Many Dr’s believe that CHD’s are genetic, although most people know nothing of Heart Defects till they have a child born with one....The doctors have said that to us....They also said as I have a heart defect and my girls do the chances are if we have a boy he would be fine but after everything we've been through we don't want to take the chance....

 Babies born with CHD’s may need their first open heart surgery at just a few hours or days old.....

CHD’s can not be cured, the heart must be monitored throughout life.....Some will need multiple open heart surgeries, some may even need a heart transplant....

I have been lucky so far not to need any more surgery but my girls and I will probably need surgery in the future to repair our leaky heart valves...Not for a long time yet though...The last check up we had in October things were good....We went from yearly check ups to a check up every two years....Hooray!! 

Find out more at CHD-UK


  1. Wow, I have just read your story.

  2. Wow, that's scary. So glad these things were detected soon enough for you. I'd never really heard of Congenital Heart Defects before, so thanks for sharing that.

  3. I read the story of your daughters earlier, and I still haven't forgotten it. CHD awareness is a must and I'm going to share this on my blog.