Meet Charlotte Fisher

Hi, my name is Charlotte Fisher and I have a baby called Elton who was born on the 3 February with OA/TOF.

We had absolutely no idea when I was pregnant that Elton had this condition. My scans all were fine, apart from on one scan that picked up that I had a high mean uterine blood flow, which yeah, what does that mean? We had no idea what that meant, and I was just told to take aspirin in case I developed preeclampsia. So that was the only thing that was abnormal on my scans, but other than that, I was low risk.

So it was a massive shock to my husband Sam and I when Elton was born with this condition.

We found the TOFS charity, particularly their website, a really good source of information. So, because this is such a rare condition, there’s just not a lot of information out there and even the medical people that you speak to, they haven’t even heard of it.

It’s really important to have this central organisation that provides support and information for people when they’re told that their baby has OA/TOF.

I’ve also spoken to the wider community, those other parents that are going through the same thing as me, which I’ve contacted via Instagram or they’ve reached out to me. And it’s really nice to speak to people who understand this really rare condition.

The next step for us is to start weaning Elton.

He’s five and a half months at the moment, but he’s going to be seven months in September, which is when we’ve decided we want to start the weaning process with him.  We’re really nervous about it because we’ve kind of got into a bit of a false sense of security with his milk because he’s doing so well with his milk now, so that’s just going to add another level of anxiety for us.  Luckily, we’ve got a really good SaLT support, so she’s going to be helping us with the initial weaning.

My husband Sam and I found out about the TOFS charity really, really early on. I think it was day one when we were told that Elton had this condition. We were handed the TOF book, which we found really useful source of information, and other than that, we’ve been checking the website with any questions we have, because it really is the central place that you go to if you need to find out information about this rare condition.

One thing I feel quite passionate about is raising awareness of the condition, not only amongst the general public when Elton’s coughing and making his usual noises so that I can say to them, oh, he’s got OA/TOF, and then they can say, oh, right, okay.

Rather than a big long explanation about what actually it is, but also to the GPs and medical professionals. I took Elton to his first checkup and the GP didn’t have a clue what it was.

She actually said she read the notes and said, oh, so he was born with suspected TOF. And I was, no, he has OA/TOF. So, yeah, it would be nice to have more wider awareness in the GP community.