Tuesday 14 February 2017

A day for hearts. #CHD #CHDAWARENESS

Did you know this week was Congenital Heart Defect Awareness Week?

CHD stands for Congenital Heart Defect....CHD is the number-one birth defect and the leading cause of birth defect-related deaths worldwide but awareness is low...

Congenital heart defects occur when a baby's heart fails to form properly during early pregnancy. Common examples include holes in the inside walls of the heart and narrowed or leaky valves. In more severe forms of CHDs, blood vessels or heart chambers may be missing, poorly formed, and/or in the wrong place.

CHDs occur more often than Spina Bifida, Down Syndrome or hearing loss and kill twice as many children as childhood cancer!

There are approximately 35 different types of congenital heart defects.

Signs and symptoms could include:  

A blue tinge to the skin.
Excessive sweating.
Extreme tiredness and fatigue.
Poor feeding including shortness of breath during feedings, leading to poor weight gain.
Rapid heartbeat.
Rapid breathing.
Shortness of breath.
Chest pain.
Poor blood circulation.

Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive. Sometimes surgery is often not a cure for CHDs. Many individuals with CHDs require additional operation and medications...

People with CHDs face a life-long risk of health problems such as issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or stroke.

I blog about CHD's every now and again. Eight years ago yesterday we found out there was a problem with Ellie's heart....

One night the kids were messing about and Ellie managed to get her fingers jammed in Becky's bedroom door....While getting her fingers fixed they realised Ellie had a problem with her heart and it was found she had a Atrioventricular septal defect (AVSD) (A hole in her heart) Becky showed the same symptoms so we got her checked out. Becky had the exact same defect on her heart as Ellie. Becky had open heart surgery on the 17th of August and Ellie had her's on the 18th. I was also scanned and it turns out our hearts are identical....I was lucky not to need surgery when I was a child though....

You can read the full story Part One and Part Two....Now the girls are left with leaking heart valves....We go to the hospital every 18 months now for check ups. The girls are fit and healthy and their heart defect doesn't effect their day to day life....They're just normal girls. They probably will need surgery in the future but it will be in about 20 years....

Without the surgery they would have died in their teenage years.....The teenage years seemed a long way away then but Becky is 14 now. Without the freak accident and the surgery she may have been dead by now....

Tiny Tickers is a charity I support.....They want to increase early detection rates of cardiac conditions....Rates for heart problems being detected during pregnancy have doubled since they launched! They train sonographers to spot defects during routine pregnancy scans, support families with a diagnosis, campaign to improve service standards and generally raise awareness!

Both of my girls were discharged from hospital when they were babies with heart problems....No one knew, including me. It was only down to the freak accident of Ellie jamming her fingers in a door that their conditions were found....Maybe if the sonographers had more training the heart problems would have been picked up before my girls were born....


  1. I'm familiar with your girls story and still totally amazed that it was down to a freak accident that the hospital found out about it. Thank goodness for trapped fingers! Well done for raising awareness xx

    1. It is quite the story...The trapped fingers basically saved their lives.
      Thank you!

  2. Well done for raising awareness! You sure had a tough time back then. Thank god the condition was picked up. They are both brave and beautiful girls :) x