Even though our small charity is facing our toughest months in our 20 years we are still here… delivering support and services amidst the harshest of circumstances. So we wanted to share the good news; the news that has kept our spirits up over the last few months.
SUPPORT FOR PARENTS: We continue working hard to ensure there is relevant support for parents facing their CHD journey. The ‘normal’ treatment of congenital heart defects is tough enough. Some elective surgeries are being cancelled; some units aren’t operating; for urgent surgery only one parent can be at the hospital; outpatient clinics are cancelled or being changed at short notice, and support is having to be given at arms length because of social distancing. We therefore launched a new section on our website to support the emotional well-being of new parents who find themselves confronted with congenital heart disease. And during lockdown we have also launched a ‘buddy’ system whereby parents can get peer support by way of phone calls and text messages from a CHD experienced parent. Read more here.
SUPPORT FOR NEWBORNS AND HOSPITALS: We have also been able to press GO on our pulse oximetry project again and we are ramping up the number of machines being placed in maternity units across the UK. We still aim to have placed 330 machines across the UK by April 2022. Orders will soon be winging their way to Milton Keynes Hospital, Solihull Hospital and Queen Charlotte’s & Chelsea Hospital’s maternity unit. You can read more here. And take a look at our map of where we have placed pulse oximetry machines to date.
SUPPORT FOR SONOGRAPHERS: We are also helping to create new guidelines for sonographers that will help thousands of expectant parents affected by pregnancy complications each year. Research led by the University of Leeds will for the first time provide sonographers with specific words and phrases to be used consistently when explaining miscarriages, foetal deaths and anomalies during scans, including instances where congenital heart disease is suspected.
“I have personal experience of being a parent on the receiving end of unexpected news – my daughter’s heart defect was spotted at my wife’s 20-week pregnancy scan. The way you are told about your baby’s potential condition can have a profound impact on what follows and how you as expectant parents cope with it. Our sonographer did a good job – she was honest, clear and compassionate in the way she told us about our unborn baby’s heart.”
Jon Arnold, Heart parent & Tiny Tickers CEO
At present, there is no standardised way of communicating scan findings, which can lead to increased distress for the expectant parents. Alongside this work, we will be developing a range of resources for sonographers that combine their experiences and those of our supporter families to offer support and advice covering the topic of communicating unexpected news.
You can read all about this piece of work here.
SUPPORT FOR HEART FAMILIES: And finally the Tiny Tickers Big Knit! When a baby is in intensive care, their parents are often unable to give them a cuddle or hold them for long periods of time like they otherwise would. Bonding squares can help parents and babies in this situation feel closer. So we have called on our supporters, with the help of Super Knitter & Heart Grandparent Diane, to knit bonding squares for tiny hearts. You can find the pattern here.
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