Off camera: Smile!
[Music playing] [Laughing]
[Music playing] Ellie: Come here, I’m going to lift you on. He’s heavy, he’s heavy. Be careful. Sarah: Go! Max: Go! Martin: My name’s Martin and this is Sarah and we’re parents to Max, who’s three and he’s got two older – a brother and a sister. Ellie who’s eight and Ben who’s six. Max has got a hearing loss severe to profound and he’s currently wearing one cochlear and one hearing aid. And that’s where we’re at, at the moment. Max failed his newborn screening, as I guess probably a fair amount of youngsters do for one or more reasons. And then, so we were immediately referred for further treatment and tests which we went on. So we had subsequent tests and ABRs (auditory brainstem response test), so more in-depth tests trying to give us a better level of detail as to what the issues were. But it wasn’t actually until he was around 20 months that we were actually officially told that there was a permanent hearing loss and the severity of that loss. And it’s at that point really that everything’s kind of accelerated at quite a pace. Sarah: When he failed the newborn hearing screening test we wasn’t overly concerned.
Martin: No. Sarah: We just thought, I had a water birth and I thought oh maybe there’s congestion in his ears. And they did say there might be fluid in his ears didn’t they? Martin: Yeah.
Sarah: And they just said “Oh, just come back”, they didn’t seem overly bothered about it, they just said come back in a month. Martin: Yeah, I think, excuse me, all the way along from professionals there’s never any sense that things are overly drastic because obviously they’re not wanting to…
Sarah:…alarm anybody. Martin: So it was all put across as relatively routine, it’s one of those things and we need to monitor it, and that’s where we were at. Until that 20 month final, we still weren’t sure that there was any permanent hearing loss or to any extent the severity of the hearing loss. At that point they’d ascertained that the hearing loss was mild to moderate I think they were putting it at that point, but there still was this underlying…
Sarah: Congestion. We like that word congestion. Martin: Yeah, so we were like “congestion, so something that could be cleared” and that’s what we thought it was. Sarah: You know everybody knows that the first 12 months are crucial for a child to develop their listening and for their speech and you know, he’s behind his peers. Martin: We would definitely agree that there’s been a loss. Sarah: It has affected his development, his listening and speaking. We had a lot of people asking us why he was aided so late and we went to one of the NDCS (National Deaf Children’s Society) newly identified weekends and there was a lot of babies there that had hearing aids from a few weeks. Martin: Yeah.
Sarah: And parents were asking us “Why didn’t he get aided at 20 months when he failed the newborn; that’s what the newborn’s there for?” Martin: There was a lot of confusion as to why that had happened from parents and professionals at those groups. Sarah: Because we didn’t have the answers, we didn’t know. Martin: We already had the doubts, so the way we approached the professionals that we were dealing with at the time and just asked that question and I guess the protocol was for them to then investigate and that’s where it became a formal complaint if you like. An issue which they’ve spent the best part of two years investigating. Sarah: 18 months. Martin: And we actually got some results earlier and effectively what it says is that we, there was information at two months that should have been provided in more detail, and that was either not provided at all or it just wasn’t offered in the right format. There’s nothing we can do about that but in a way we didn’t miss anything. Sarah: They said that they missed it at two months. Martin: We weren’t privy to any of the information for us to make a better decision. Sarah: They said there were certain things that they should have done and put in place at that two month ABR test which wasn’t done. They also checked 1,000 children that they’ve seen, they pulled their records and they went through all their records with a fine toothcomb to see if any of those children also had the same problems that we found with Max and they had no issues. So Max was the only child but it was a very thorough investigation. Anybody that maybe has experienced a delay in their diagnosis I’d say that they should challenge it, if they don’t think something’s right then ask, even if it’s going to help another child in the future because what we’ve found with our situation is that they’ve put leaflets in place and they’ve put things in place now that will stop at the right places, hopefully it won’t happen again.