Heart Week 2015 || Tiny Tickers

Not a single day goes by where I'm not haunted by the fact that unless Martha's heart defect was picked up at our 20 week scan - she wouldn't be here today. I'm not over dramatising things - it's a medical certainty! She was born looking perfectly healthy; we would have been discharged the day after she was born but within a couple of days her arterial duct would have closed and Martha Grace would have died. Even if she didn't have an Interrupted Aortic Arch, just her VSD - she would have struggled to feed as she wouldn't have been able to coordinate her breathing, sucking and swallowing, she wouldn't put on any weight and I hate to think how many weeks of worry would pass of being fobbed off with other possibilities before anyone thought to check her heart - that's assuming she didn't go into heart failure and die first.

Today I would like to introduce a charity which aims to improve the early detection of heart defects, Tiny Tickers.

Tiny Tickers is a small national charity that aims to improve the detection, care and treatment of congenital heart defects in
babies. We were founded in 1999 by world-renowned foetal cardiologist, Dr Helena Gardiner, when she realised that many of the babies she was caring for could have been helped earlier.

When CHD is detected during pregnancy, babies get treatment from the first possible moment – and early detection is shown to greatly improve their chance of survival and long-term quality of life, lowering the risk of side-effects of heart failure, including brain damage.

Early detection also means that parents-to-be can get the support they need to prepare them for the future; it means fewer dangerous and costly emergency admissions to hospital, fewer cancelled planned operations because of emergency admissions, and less strain on emergency transport services.

Tiny Tickers provides specialist training to health professionals and sonographers so they are better equipped to identify a heart defect during a pregnancy scan. We support parents and families dealing with a diagnosis, and we raise awareness of heart defects in babies so that parents know what signs to look out for.

Early detection

Training is Tiny Tickers’ core activity. We provide specialist, on-site training in maternity hospitals to sonographers and health professionals who perform pregnancy scans. To date we've trained thousands of health professionals, helping to increase national detection rates from 25% to 42%.

We know that the earlier a baby's heart problem is detected, the greater their chance of beating the condition and avoiding any long term health problems. With over 3,000 babies born with congenital heart defects in the UK every year, the impact of early detection is huge.

Unfortunately, in large parts of the country, detection rates are significantly below the national average of 42%, for example in North Yorkshire & Humber they are 24.5%, and in Nottinghamshire they are 31%. We are working to ensure that there is equality of care and standardised detection rates for all babies, irrespective of where they are born.

The Big Tick

The 20 week scan – the fetal anomaly screening that all mums-to-be are offered by the NHS – is the best chance to detect heart defects before the baby is born. But at the moment, only about one third of these life-threatening defects are spotted during pregnancy – and we’re trying to help sonographers and increase that.

Our Big Tick campaign is simple: we think that every parent-to-be should be given enough information to properly discuss their baby’s heart health with their sonographer during the 20 week scan. In the vast majority of cases, your sonographer will be able to give you the reassurance that your baby’s heart has been thoroughly checked and all looks healthy. If your sonographer does think your baby may have a poorly heart, helping spot it at your scan means you’ll start receiving the care and support you and your baby need from the earliest opportunity.

Order our Big Tick card here – www.bigtick.org.uk

Think HEART

These are the signs we recommend you look out for if you are worried your baby has an undetected heart condition. The word HEART points to a range of symptoms that, although non-specific, may be signs of an underlying heart defect - reducing oxygenated blood flow and needing urgent attention:

• Heart rate: too fast or slow? (normally 100 to 160 beats per minute)
• Energy & Feeding: sleepy, quiet, floppy, too tired to feed or falling asleep during feeds?
• Appearance: a pale, waxy, dusky, blue, purple, mottled or grey colour may mean that not enough oxygenated, red blood is getting to the body (normal oxygen saturations are 95-100%)
• Respiration: breathing too fast or slow? (normally 40-60 breaths per minute)
• Temperature: cold to touch - particularly hands and feet?

Finding out about Martha's heart condition at 20 weeks meant we were prepared; we met with two Hospitals and chose the one that offered Martha the best chance. It meant that as I was delivering her I had a team of Pediatric Consultants at the end of my bed ready with an IV of Prostin and a cot waiting for her in NICU, it meant we had one of the best Surgeon's in the country ready at GOSH as soon as there was a bed for her in CICU.

As awful as it was to discover our baby had a heart defect at 20 weeks - we consider ourselves to be amongst the lucky ones.

GM

x

The purpose of our blog is to raise awareness for Congenital Heart Defects and offer hope to families who are about to begin their journey. If it can happen to us then it can happen to anyone. Please consider sharing this post using one (or more) of the social media icons at the bottom of this post - it might reach someone very much in need. Thank you xx