Twelve babies are born with heart defects every day in the UK, according to the British Heart Foundation (BHF).
Heart problems are still the most common defect in newborn babies and new analysis suggests approximately 6 percent of these babies will die before their first birthday.
Susie and Duncan Cook's second child, Zoe, now almost two, was born with a hole in her heart.
Mrs Cook, 38, said: "I had to call 999 twice before Zoe had her operation because she went grey in her sleep. I just couldn't get my words out on the phone. It was a horrendous experience.
"As a parent you want to be the one to fix anything wrong with your child. But when they need surgery, you can't. It's all the more traumatic because you feel so helpless."
There is some good news - the number of babies and young children dying from a heart defect has fallen by 80 percent over the last three decades.
More top news
The toddler died after suffering eight months of abuse at the hands of her legal guardian Kandyce Downer.
Most of the 150 child refugees in Calais Jungle have given up any hope of getting help from those in power so will PM's climbdown help?
Donald Trump has carved a deep dividing line in the Republican party. But despite his success, the "Never Trump" movement is still alive.