At just two weeks old, our baby girl Penelope was diagnosed with a serious heart condition called Tetralogy of Fallot, a combination of four heart defects. In addition to this, Penny also has a right aortic arch, meaning she has five defects in total, which required extensive open heart surgery at just 3 months old.

None of these defects were picked up at our routine anomaly scans, which meant that Penny left the hospital as a newborn undiagnosed and at serious risk. Life expectancy for a child with Tetralogy of Fallot without repair is around 1-5 years, therefore it is critical that these babies get the earliest diagnosis possible.

Now five months old, Penelope has already endured two stays in the paediatric critical care unit at Derby Royal Hospital, and was transferred by ambulance to stay at Leicester Royal Infirmary as she began to have hyper-cyanotic tet spells at around 8 weeks old which required medication and oxygen. These spells continued right up until her surgery and were absolutely terrifying for us as parents; we’re certain that an earlier diagnosis would have helped us to feel much more prepared about what to expect of her condition in those early weeks and months. We’re so grateful that she did receive her diagnosis early on, however not all babies are so lucky and sadly some babies are not diagnosed until their little hearts are already failing.

Tiny Tickers not only raise awareness of congenital heart disease in babies, but also help to provide essential equipment and training for hospitals and sonographers so that more CHDs are picked up during pregnancy or soon after birth. They have been a huge support to us at the start of Penny’s heart journey, sending out a wealth of information, support tools, and helping us to connect with other heart families.

Throughout October, I will be walking/cycling 125 miles to raise money to support the 1 in 125 babies born with a serious heart condition. This is a huge challenge for me, not being particularly fit, but one that I am determined to complete for my beautiful Penelope and all of the other babies born with tiny, broken hearts ❤️

£10 sends a support pack and hug button to a family who have just found out their baby has a heart condition

£12 sends a pack of data cards to a sonographer to assist with scanning

£67 trains one sonographer to be better able to detect heart defects at pregnancy scans

£725 places one bedside or 3 handheld pulse oximetry machines in a maternity ward, helping to detect heart defects in newborns

Tiny Tickers say:

A baby is born with a serious heart condition every two hours in the UK and despite congenital heart disease being one of the biggest killers of infants, only around half of congenital heart defects are picked up during routine prenatal scanning.

With your help we can provide a safety net for the 1,000 babies each year that leave hospital with their heart defect undetected, increasing detection rates, improving a baby’s chances of survival and long-term quality of life.