Help babies with serious heart conditions

Babies born with undetected heart defects will often fall into the early stages of heart failure before anyone knows how seriously ill they are. This significantly impacts their long-term quality of life.

Last December two-week-old Ivy was rushed to hospital after refusing to feed for twenty-four hours. Her parents had known something wasn’t right soon after her birth. Despite voicing their concerns to numerous health professionals, it wasn’t until Ivy went into heart failure that she received a diagnosis of Congenital Heart Disease (CHD). After spending her first Christmas in hospital awaiting open heart surgery, Ivy finally had her operation at the beginning of January. Luckily, she pulled through and is now a happy, healthy baby on the run up to her first birthday. But her story could have easily ended in tragedy.

Ivy’s mum, Sam, knows how lucky they are to still have her – but if her heart condition had been detected during Sam’s pregnancy, Ivy would have received life-saving treatment as soon as she was born. When CHD is detected during pregnancy, babies get treatment from the first possible moment.  Prenatal detection also means parents-to-be like Sam get the support they need to prepare them for the future. It also leads to fewer dangerous and costly emergency admissions to hospital. 

As the only national charity working to improve early detection rates of CHD in babies, Tiny Tickers improves the outcomes for babies with heart conditions in the following ways:

• We increase prenatal detection rates (the only UK charity focused on this) for example through specialist training of sonographers
• We campaign for and place pulse oximetry machines into maternity units that can identify heart or respiratory issues in babies quickly, easily and inexpensively
• We provide a safety net for babies sent home with an undetected heart defect by increasing awareness of the signs of early heart failure in babies with our Think HEART campaign
• We support the families of babies with CHD. CHD kills more babies than any other congenital condition in the UK, but people know less about it than Down’s syndrome, cleft lip and spina bifida. Without this prior knowledge, families dealing with a diagnosis can feel even more alone
• We lobby and influence to improve detection rates within the NHS and representing parents and babies on a number of health boards.