Sutton-based Patches Heart Group which offers help and advice to families of children with heart conditions is expanding its support network across the UK.
In just three years Patches has grown from a supportive group of Ashfield mums to a UK wide 24 hour volunteer-run helpline.
There can be few things more devastating for a parent to hear than being told that their newborn baby has a serious heart problem.
But whereas in the past people may have felt like there was nowhere to turn, the work of Sutton mum Maria Linfield means that they do not now have to face their fears alone.
Maria set up Patches Heart Group following her own experiences of having a child born with a congenital heart defect (CHD).
Her daughter Casey Beau Johnson, now nine, had her fifth open heart surgery last july.
She said: When Casey Beau was born, we knew no-one else with a child with a heart condition we felt alone and after years of struggling to find support, we set up Patches.
“When you go home you are left to your own devices and it can be a scary time.
“The need is so great because there’s nothing else out there in the community, only the ones attached to the heart hospitals,” said Maria, who also has two sons, Brock (11) and Bode (5).
“We didn’t know anyone else anywhere other than the people we met at Glenfield Hospital.
“When we came home, the health visitors had no idea of heart families in the area, the midwives didn’t, nobody knew anybody we could talk to.
“To go out and mingle in a normal mother and toddler group with a child with a scar on her chest and everyone looking at you - you didn’t feel that you fitted in with anybody else.
“Once I had got to the point where I felt strong enough to be able to cope with everything going on in our own lives, I wanted to make the difference to other families.”
Said Maria: “Our concern is that there is nowhere near enough awareness - it’s all too common for CHDs to be missed pre-natally and for heart murmurs to be shrugged off as nothing, when in actual fact many of the supposed murmurs can turn out to be complex cases of CHD. In some cases a late diagnosis can be fatal.”
Sarah Milner’ son Benjamin, now three suffers from Shone’s Complex, a rare form of heart disease.
Sarah 37 of Forest Town said she found herself in a very unknown world when he was diagnosed during her 20 week pregnancy scan at King’s Mill Hospital.
“We were told he will need open heart surgery in the future. He gets very tired and has athsma and chest infections too.
“When you meet someone with the same experience you don’t feel so alone. It is great to meet other families on get-togethers. You can talk about the good things children are doing, have a friendly chat and some people can share equipment they might need.”
The group is hoping to set up a mobile service visiting different venues around Nottinghamshire, in addition to its permanent base at the Ashfield District Council offices on Fox Street, Sutton.
Now that Patches is expanding, Maria hopes that families living in other areas will also benefit from the support.
Maria said: “My feelings as a heart mum is it shouldn’t be a postcode lottery for help.”
The group also offers grants for families who are struggling to pay bills when they find their child has a heart defect.
To find out more, visit www.patchesheartgroup.org, Facebook or via the helpline on 0796086843.