Possible Spina Bifida

Hi everyone I’m waiting for testing but I had a second scan to check babies spine and was told there’s a possible chance of spina bifida but they couldn’t confirm it because they were only trained to look for signs of it and not diagnose it. I’m really scared about what this means as they were not supposed to tell me without a specialist opinion. Is anyone else going through diagnosis that I could talk to?

There’s not a lot of support groups around and not a group for the condition on here