Jun 1, 2026 · 1 hr 12 min · 13 segments
My friend Sam Ofoegbu is my guest this week, talking about her little boy Theo who’s 4. Theo has Down syndrome and needed heart surgery after he was born. He is also on the ASD pathway. We discuss…
Sam OfoegbuGuestGemmaHostGod, the general anesthetic's a bit rough, isn't it? I think more mentally than physically, like he was absolutely fine, but I was so anxious in the run-up.
It was like a planned surgery.
I don't know if you're the same, if, um, your kids have ever had to have surgery.
It, this is like our seventh date of trying to get it done because he just kept being sick all the time, and then they wouldn't do it.
So anyway, he has been such a brave boy.
I'm so proud of him.
Well, I say everyone, by that I mean the people that were taking care of him, like before and afterwards.
I will say this, slightly problematic language around Down syndrome from the surgeon, which was a little disappointing, and in a different situation I might have kind of maybe said something.
But I was so up the wall, I was like, "Okay, I'm gonna let this one go." In other news, we have had the educational psychologist report back, who went in to see Leo in school, and it's a hard read, isn't it? Have you gone through the EHCP process? I know that loads of people who listen to this podcast are a little bit further along the journey than me, so you might have done.
And it said everything we needed it to say.
She said lots of lovely things in there as well about how polite he was and how sociable he is, but there was one bit.
Now, when Leo started to have physio, I don't know if this is the same with your kids if they've had physio, initially they were like, "Right, this is the age he's kind of comparable to, uh, you know, for what he's doing." And quite quickly I said to them, "Would you mind not telling me that? Because it's not making me feel good, and I don't need to know that.
I understand that maybe they do, but I don't need to." And they were like, "That's absolutely fine." And nobody's ever mentioned that since.
But I guess this is one of those situations where they have to write this in a report, and it was like, you know, this is the, the age that he's kind of compared to, and it was quite different to the age that he is.
And that, for me, was quite difficult to read.
I's, I'm sure I'm not alone in, in that.
It, those reports in black and white, they can just get you sometimes, can't they? And that threw me for a little bit.
But anyway, I think it's good to share those things, good to share the highs and the lows.
That's what this podcast is all about.
God, the general anesthetic's a bit rough, isn't it? I think more mentally than physically, like he was absolutely fine, but I was so anxious in the run-up.
It was like a planned surgery.
I don't know if you're the same, if, um, your kids have ever had to have surgery.
It, this is like our seventh date of trying to get it done because he just kept being sick all the time, and then they wouldn't do it.
So anyway, he has been such a brave boy.
I'm so proud of him.
Well, I say everyone, by that I mean the people that were taking care of him, like before and afterwards.
I will say this, slightly problematic language around Down syndrome from the surgeon, which was a little disappointing, and in a different situation I might have kind of maybe said something.
But I was so up the wall, I was like, "Okay, I'm gonna let this one go." In other news, we have had the educational psychologist report back, who went in to see Leo in school, and it's a hard read, isn't it? Have you gone through the EHCP process? I know that loads of people who listen to this podcast are a little bit further along the journey than me, so you might have done.
And it said everything we needed it to say.
She said lots of lovely things in there as well about how polite he was and how sociable he is, but there was one bit.
Now, when Leo started to have physio, I don't know if this is the same with your kids if they've had physio, initially they were like, "Right, this is the age he's kind of comparable to, uh, you know, for what he's doing." And quite quickly I said to them, "Would you mind not telling me that? Because it's not making me feel good, and I don't need to know that.
I understand that maybe they do, but I don't need to." And they were like, "That's absolutely fine." And nobody's ever mentioned that since.
But I guess this is one of those situations where they have to write this in a report, and it was like, you know, this is the, the age that he's kind of compared to, and it was quite different to the age that he is.
And that, for me, was quite difficult to read.
I's, I'm sure I'm not alone in, in that.
It, those reports in black and white, they can just get you sometimes, can't they? And that threw me for a little bit.
But anyway, I think it's good to share those things, good to share the highs and the lows.
That's what this podcast is all about.
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