Tuesday 12 February 2019

That time of the year where I talk about Congenital Heart Defects!

February is all about the hearts with Valentines day but to me it is also about raising awareness about Congenital Heart Defects

It is over 9 years since my girls and I went into hospital so they could both have open heart surgery to repair the holes they have in their hearts. You can read our story here

As many as 1 in every 100 babies born in the UK has a serious heart defect. They are the most common birth defect's. They kill twice as many children as cancer every year! 

Some congenital heart problems are 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!

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. 

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 year/eighteen months. 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....


  1. What a brave post. I hope your girls are doing really well.

  2. So important to raise awareness. So glad that your girls’ heart defects were picked up and that they are doing well x

  3. Such an important thing to raise awareness of Kim, sharing the girls story will help lots of other parents and children in the same position.

  4. Great awareness for such an important topic. Thank you for sharing X #mmbc