AIBU to be upset with HV?

[mscongeniality]

Background:

I'm a FTM to a 28 month old DS. He was born 6 weeks premature but was otherwise physically fine and didn't need any interventions or time in NICU. We were discharged 3 days after he was born and we got on with life. He was small (2.2kg) but otherwise he seemed to be doing well. I never had any concerns about his development although worried about his small size more than anything. My DH and I don't have any family around and he went back to work after 2 weeks so I didn't have any help and was lucky that I didn't get PND or suffer from the baby blues.

Last September, we went to see the local health visitors team for his 1 year check but it was very late because they were extremely behind schedule. By the time they got around to us in he was about 16-17 months but corrected age of 15.5 months. The lady asked me about his speech and I said he's babbling but not talking so she asked the local SALT lady to come in as well. They both went through the ASQ questionnaire and at the end it seemed to appear my DS was very behind and they recommended referring him to the Child Development Centre. We saw the Paed who just took everything off the ASQ and some stuff I said and put together a report saying everything is pointing to Global Development Delay.

I went through the worst time of my life. I was so so worried, I stopped eating, lost so much weight. At my lowest I was at 41kg. I couldn't focus on anything else and spent all my time assessing everything my DS did or didnt do. In Feb, I finally went to my GP and started ADs. I had never suffered from anxiety until this. I took my son to a private SALT, OT, and one of the top private developmental paeds in London. All of them told me he's fine and not ASD (one of my worries). I felt like a failure that I hadn't noticed he was behind because I literally had never had any concerns.

Why am I angry? It turns out that intial ASQ questionnaire they had used was the 18 month one. So they used 18 month old developmental guidelines to assess an essentially 15.5 month old. Of course he wouldn't pass it! This is despite him being premature coming up many times in that meeting. I have looked it up and the publishers of ASQ spefically say to do age correctment when assessing premies.

I feel like I've spent the entire last year worried and being anxious and not enjoying this precious time with my son. I can't even describe how bad it was.

I've been thinking about it now because tomorrow is his 2-2.5 month check and I filled out the correct age questionnare and he is doing okay, no need for intervention in any category.

AIBU to I mention this to the HV tomorrow? I don't think its going to be the same one from last year.

Thank you if you got this far, I just feel better writing it all down.

Sounds awful - I would make a complaint if for no other reason than so it doesn't happen again! And if you know he is doing fine then I wouldn't bother going for the checks - they aren't compulsory!

Yanbu. Go in armed with the info you have now and hopefully you'll feel able to be more assertive. Good luck.

This is very poor practice. It sounds as though several health professionals have used the information on the assessment without noticing it was for the wrong age group. If you haven't done so already I really would consider making a complaint, and I say that as a health professional myself (although a different area).

Sorry you had to go through such a stressful experience. It's a difficult process to go through when something really is a concern, but to put you through that unnecessarily seems careless.

Please do feedback to the head of service even if you don't want to make an official complaint. I had wrong info from my HV about breastfeeding and took it higher and they retrained all their staff as they were following very out of date guidance.

yanbu - sounds extremely stressful

Sounds very stressful for you but if he was 17 months when he was assessed then an 18 month tool may not have been too inappropriate & may have been more appropriate than a 12 month tool. It also sounds like more than one professional had concerns and if global delay was mentioned then it sounds like there were concerns in other areas which couldn't be blamed on the initial assessment of his speech. It sounds very stressful though and I'm glad everything was ok

YANBU.

I have to say I've been extremely unimpressed with every HV I've come into contact with. I'm dreading seeing them when DC2 comes along.

moany you don't have to see them, I didn't bother after I came home with my second, I weighed her myself following the red book chart and rang them up and said I didn't require their help at the moment but would get back to them if I had any questions, which I would have done if I'd needed help. I didn't and I felt confident second time around and had issues with the care first time around so decided that with a healthy baby with no issues to decline their services. It's not compulsory and frees them up to help someone who really needs their services more. I wouldn't have stopped them coming round though if they'd have been concerned but they were only too happy to get someone off their books!

Definitely complain. All that anxiety because several people didn't do their jobs thoroughly. I support the use of standardised questionnaires and I would be livid if they were used incorrectly.

Thanks all. I don't know if I will make a formal complaint but I will speak to the HV tomorrow and let her know what happenned.

tinytoucan Exactly! It only came to my attention when I was reading through the Paed's report months later and she had written about the 18 month ASQ and I was like, wait he was barely 15-16 months corrected age. If something had been actually wrong its bad enough but I do feel I went through this ordeal unnecessarily.

I was just a naive FTM who believed the professionals knew exactly what they were doing. I didn't have the knowledge I have now.

FoxesSitOnBoxes Yes he was 17 months but like I mentioned in the OP he was premature so he was corrected age of 15.5 which is a big difference at that age. All medical professionals say to keep correcting for prematurity until 2 years of age.

I seen my Hv once (I think it's best to see them at the first visit otherwise they become suspicious) but then just never see them again after. I've also never been a fan.

OP, I had a really similar experience - my baby was also born at 34 weeks, we were called for 12 month check early, just before 11 months so around 9 months corrected - I questioned the appropriateness of the assessment tool showing him as delayed but was repeatedly told 'we stop correcting at 12 months anyway' (which made no sense as he wasn't 12 months and I have since found a lot of sources say 2 years) plus they kept advising me to stop breastfeeding as 'he doesn't need it anymore'. I was so upset, I really feel for you as I understand how awful your experience must have been. I complained, which did make me feel better. And discovered that the woman doing the check hadn't actually been a HV, I assumed it was as she didn't tell me any different, but she was an unqualified nursery worker.

I have the 2 year check due any time, dreading being called :-(

That's awful! You poor thing! Definitely take it further. Sounds like you need closure if anything else.

What a waste of everyone's time, resources and such a stressful time for you too! Sounds like those HVs are missing vital training which needs addressing.

My dd was born at 32wk, had losds of issues with this one hv. Pretty similar to the whole correct/actual age. I spoke to my hv (saw her regularly) and she was shocked and made a note to look into it.
Some health visitors in my opinion dont have the first clue about premmies.

Really happy that he doing well, i understand that worry, and the not eating because of worry. Kids eh put years on you, or may its just mine lol. Felt like ive aged 20 years since my dd was born 4years ago lol.

Thanks Summer! I'll probably do that then.

I'd definitely mention it, just so it doesn't happen again. I've just been shadowing and working with health visitors as part of my course, and it's a service that's stretched pretty thin and has difficult limitations set on the service they can provide.

But seeing as he came up "delayed" they definitely should have double/triple checked the documents rather than just referring. There should have also at least been a follow up call to see how you got on with paediatrician, not required by policy but it's good practice! The health visitors that I worked with at least checked documentation and got advice from other professionals before making referrals.

Hopefully a good "airing out" conversation with the HV can at least avoid mistakes in future! Be assertive and clear about the pressure and upset it caused you

I agree that HV don't have much experience of premmies. My DS was born at 27 weeks and they always tried to weigh / assess him at his actual age. Luckily I'm a bolshy cow and did my own research then took what HV told me with a pinch of salt, but I can see how it would be upsetting.

One thing I do not understand about HVs is their really variant levels of knowledge. It seems like they are required ro cover several areas of specialism but often only have on depth knowledge of one or two.

For example, my HV is an ex PICU nurse so is well up on child development. But she fairly clearly doesn't have the first clue about, or interest in, maternal mental health which is also supposedly something she covers.

OP can you ask in advance if there is an HV available who is specifically from a nursing background or has experience of paediatric nursing? Might be better suited to your needs than an ex MW or similar.

Similar situation here but my DS wasn't premature. He got his 12 month check at 13 months and the HV advised that she was worried about his development because he wasn't walking, saying 20 words and following instructions.....

As a first time mum I found this very stressful and upsetting until I spoke to friends who had recently had the 12 month check and they'd been asked about baby proofing their houses! Turns out the HV had been reading the wrong questions.

I have since disengaged and the HV no longer comes here.

The same happened to us, DS was premature but HV don't seem to take this into account, various experts saw him who agreed he was perfectly normal, showed all the markers of doing what was needed, but was just about slower. He's now nearly 3 and is finally almost indistinguishable from his peers.

DS was 7 weeks early and I think HV don't seem to think this has an impact unlike being a micro premmie.