Oct 5, 2026 · 49 min · 10 segments
Ciara Burnside joins me in this episode to talk about her 6 month old son Ralph who has Epidermolysis Bullosa, otherwise known as EB or Butterfly Skin. She explains what that is, what it means, and…
So how long was he in hospital for? How long was it before you could take him home?
So he stayed in the, um, the intensive care unit for 16 days, but actually he, he didn't need to.
So as soon as the Great Ormond Street nurses saw him, they said that he can be discharged as soon as his jaundice, um, and his sugar levels, 'cause those were two other issues that he had, as soon as they were normal he could be discharged.
Um, because the wounds and stuff, that's not something they would be kept in for.
Right.
We were, we were handed something that was glass, and we were told that it was ours to protect and, and we had no idea how, how to look after a baby, let alone a fragile baby.
So we pushed to have him kept for a little bit longer so we could process and get ourselves into a position where we felt comfortable taking him home.
And did they let that happen?
Um, but the Great Ormond Street nurses did say to us that the, the quicker you get him out, the better.
Mm.
Um, because of how rare EB is, not many people in the sort of local hospitals, GPs, h- they haven't seen it before-
Right
Um, we had the Great Ormond Street nurses teaching us and the hospital at the same time.
Um, the hospital were taking videos of my son being cared for to try and learn exactly what they needed to do, and we did find that a few times there was unintentional damage being done because they, they weren't experienced.
God, that must be really hard because I suppose as humans we're used to putting our trust in the medical profession, that they know better than us what to do.
So I can't imagine how that must have felt when you're thinking but you d- genuinely you don't know what you're doing.
So how long was he in hospital for? How long was it before you could take him home?
So he stayed in the, um, the intensive care unit for 16 days, but actually he, he didn't need to.
So as soon as the Great Ormond Street nurses saw him, they said that he can be discharged as soon as his jaundice, um, and his sugar levels, 'cause those were two other issues that he had, as soon as they were normal he could be discharged.
Um, because the wounds and stuff, that's not something they would be kept in for.
Right.
We were, we were handed something that was glass, and we were told that it was ours to protect and, and we had no idea how, how to look after a baby, let alone a fragile baby.
So we pushed to have him kept for a little bit longer so we could process and get ourselves into a position where we felt comfortable taking him home.
And did they let that happen?
Um, but the Great Ormond Street nurses did say to us that the, the quicker you get him out, the better.
Mm.
Um, because of how rare EB is, not many people in the sort of local hospitals, GPs, h- they haven't seen it before-
Right
Um, we had the Great Ormond Street nurses teaching us and the hospital at the same time.
Um, the hospital were taking videos of my son being cared for to try and learn exactly what they needed to do, and we did find that a few times there was unintentional damage being done because they, they weren't experienced.
God, that must be really hard because I suppose as humans we're used to putting our trust in the medical profession, that they know better than us what to do.
So I can't imagine how that must have felt when you're thinking but you d- genuinely you don't know what you're doing.
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