By Tiny Tickers’ Project Support Officer, Vicky Woodmansey
One of the messages that we have found to be the most powerful to impart to new parents faced with a congenital heart disease (CHD) diagnosis for their baby, has always been, “You are not alone”. Whether through our printed booklets giving advice from other parents, our ever-growing and compassionate community within our Facebook group or by sharing families’ stories, Tiny Tickers has always tried to connect parents and provide a place where the experience of having a baby with CHD can be shared.
When the pandemic hit and our worlds became smaller, confined to our homes and screens for a large part, we were really aware of how the isolating experience of being faced with a CHD diagnosis for your little one could be made even more so. And as the nation embraced the Zoom call for many facets of our lives – work, catching up with friends and even the odd quiz – we wanted to be able to offer somewhere where parents or parents-to-be could ‘get together’ in the comfort of their own homes and talk about some of the common worries, thoughts and concerns they were experiencing.
After successfully being granted funding from the Coronavirus Community Support Fund, distributed by the National Lottery Community Fund, our first pilot peer support groups were created in January. These took the form of two groups, one for parents-to-be and one for parents of babies and young children, held weekly over Zoom for six weeks. The groups were led by experienced facilitators and gave participants the chance to ‘meet’ other parents at a time when it was very hard to make connections with other families.
We always hoped the groups would be well received as we know how much speaking to others going through a similar experience can help, but the feedback from the groups has beyond confirmed our aspirations.
Comments such as: “We found it really beneficial and left feeling like we were really able to share how we are feeling. This is the first time we’ve reached out to connect with other people going through a similar situation to us and although it was emotional we certainly felt comforted talking to others who understand” and, “I found the sessions really worthwhile and helpful. Hearing other people vocalise your worst thoughts and feelings, knowing you are not alone with them helps put them into perspective and really start the mental healing process,” really demonstrated to us the value in providing a safe, supportive space for parents. One where they could talk about the experience of parenting a baby or child with CHD during the pandemic, or for parents-to-be to discuss the concerns and practicalities of pregnancy and birth, after receiving a CHD diagnosis at this time.
Thanks to the success of the pilot groups, we are now really happy to be continuing the sessions on a regular basis and have new groups starting in the coming weeks. The groups are kept small to enable everyone to have a chance to speak in each session and so places are very limited. You can see the available groups here.
It has been really rewarding to see the impact the groups have had, with people really looking forward to their next session and finding real practical help from others’ advice. It was also lovely to see that, after the six sessions, many of the participants chose to remain in touch, taking forward the new connections and friendships they made from their shared experiences.
If you think that the groups would help you, I would encourage you to get in touch and give peer support a go. Often the only people who we feel really understand are the ones going through the same thing and whilst Tiny Tickers can help you to find the other parents out there ready to support you, in turn your experience will no doubt help others too.
Find out more and sign up for our virtual support groups here.
With thanks to The National Lottery Community Fund for funding our virtual support groups.