DH wants to complain to hospital

[MusicalTrifleMonkey]

I don’t know what I think, so voting will be about him:
YABU - he’s wrong to complain
YANBU - he’s right to complain

Some of you might remember my thread the other day about being a crap mum. We recently found out my 13 week old has a very obvious 90% tongue tie. It’s been causing all sorts of issues since he was born, from very painful gas, to acid reflux, vomiting, lack of sleep, struggling to eat and a slow on growth.

3 people checked his tongue tie ( 2 midwives and my HV) and I saw 2 doctors who didn’t check it and dismissed my issues. Twice I tried to contact the infant feeding team to ask for help as I was having problems with him and twice they didn’t get back to me (I received a text but they didn’t follow up). They are the ones who would have done the division if discovered under 12 weeks old.

We had to pay for a lactation consultant who spotted it and now have to drive him 2.5 hours to the next county to get the division done privately and then back again.

Today I have spent all day just trying to feed him. He’s hungry and he’s tired and he is struggling to eat. I also think this has massively given me confidence issues and not helped with how I’ve been feeling, which is very down and like a terrible mum.

DH wants to put in a complaint. When the team at the hospital checked they did a brief look in the mouth, just visual they didn’t use hands, declared he was fine and moved on. DH doesn’t want money, nor does he want anyone fired but he thinks it should be flagged so that they are more thorough in future to avoid anyone else having to go through this.

I’m not sure what I think. I’m upset about everything but mistakes happen and the hospital are busy with lots of babies and it’s Covid.

What would you do? Would you say something or just leave it?

Please don’t pile on, DH is upset at seeing his son in pain and discomfort and I am very down and exhausted.

Personally I think the NHS only picks up very servere tongue ties. I wish I'd had my son checked privately. You did the right thing. I wouldn't complain as they will cover it with the fact multiple people checked who didn't probably know what to look for

I wonder now if I should complain about my treatment when pregnant, but so much time has passed since. My care was better with number two but still patchy.

I would complain. Tongue tie is dealt with very poorly - my daughter has one but I was told, after driving 40 miles to another area to see a consultant, who I had been told was going to cut it, that it wasn't too bad and he wouldn't cut it.

She has some speech issues now and I'm sure it's down to that. I can see that it isn't quite right. It might not be too bad, but it was an issue with feeding when she was a baby and I suspect her speech would be better now if it had been cut. It was identified by a midwife shortly after birth, as was my son's tongue tie, so it wasn't me being an over-anxious mother. Parents' concerns are so often dismissed.

In your shoes, I would leave the complaint for now - see how you feel in a few months time, and complain then, if you still feel strongly about it.

Complain. Too many people take a weird 'but it's the NHS how can you complain about our heroes' approach- but how can things improve if people aren't making complaints to highlight that there is a problem?

"it should be flagged so that they are more thorough in future to avoid anyone else having to go through this."

I would have zero faith of a formal complaint achieving that.

A brief personal (zoom) meeting with some of the health professionals you met with to explain what you went thru could help the specific HCPs you've dealt with do better in future.

Most HCPs do not know anything more than a cursory check for tongue tie - anything other than a classic heart shaped tongue on crying if often missed as there is very little (or no) training on tongue tie, particularly posterior tongue tie. Please do "express your concerns" about the lack of knowledge within their staff. When running a breastfeeding support group I had midwives attend with their babies who hadn''t realised their own babies were tongue-tied! Maybe ask what training is given to their staff and whether referrals are normally made to a specialist are made if there are feeding difficulties?

Firstly absolutely amazing mumma to get to 13 weeks with such a tight TT are you BF him? If so then I am amazed that you have got this far and that is completely down to you and your determination.

My son had a 90% thankfully it was snipped at 5 days but reattached at 4 months later corrected under GA.
A 90% TT is very obvious and has huge effects especially if BF so whilst I get that your upset your husband is right to complain.

Please also don't think that this has anything to do with you, I have found that TT are fobbed off by some when actually they have a huge impact. The plus side of going private is that it's done quickly. I also recommend looking into gentle sweeps under the tongue with a clean finger the following day and each day for a few weeks (not the tongue exercises which are a bit controversial).

Please have faith in yourself you have done everything right that you possibly can for your baby.

@ancientgran

I wonder if tongue tie was ever diagnosed years ago. With my kids, all the kids in my family and friends children and now grandchildren the first time I heard of a child with tonguetie was 6 years ago. So many babies seem to have it now. Have they become more aware of it or better (sometimes) at diagnosing it?

Many midwives years ago just used to separate it without the mother ever knowing any different. TT are a big issue if BF as bad ones prevent deep latch, milk transfer and mums milk supply. Sometimes the mum will be blamed for low milk when actually it's poor transfer not stimulating supply.

BF rates have gone up which is why it's become more of a issue and babies are also checked for it. With bottle feeding it's less of a issue in early stages but can become more of a issue with weaning and for some children with speech.

There is also research being conducted into why there is a increase with several different theories currently.

I think he's right to complain. I hope things get better soon.

You don't need to complain right away though - make a file somewhere easy to find with everything chronologically laid out so you don't forget.

Please DO put in a complaint. Maternity services are so bad at identifying tongue tie and it often has big impacts in the early months.

It's dispicable that they dismissed your concerns and they should check for tongue tie and correct as a matter or course, but they don't.

It's an area the NHS really does need to address.

To those saying ‘well if 3 NHS professionals told you the was no issue then maybe the private consultant is telling you your baby is tongue tied to make money’ - it’s not a question of the nhs staff not doing their jobs properly, it’s that they don’t have the specialised training to diagnose it properly. As a pp said, there are basic checks that are done but anything that deviates from the obvious, ‘classic’ tie that can be seen immediately (ie, requiring a physical examination) is often missed.

It’s not about NHS vs Private, it’s untrained vs trained. It was an nhs lactation consultant who eventually diagnosed my DD and an NHS consultant at the Evelyn in London who divided it.

I had similar experiences. With my first the HV told me categorically it wasn’t a tongue tie. I went to the local breastfeeding group at 6 weeks (after it had been closed for a summer break) and was diagnosed immediately. Told HV I had been referred to the clinic for a tongue tie division and she still wrote “no problems breastfeeding” in my red book. I still have scarring 4 years on. Second time around I was at that breastfeeding group when DC2 was 6 days old and referred again. Told (different) HV who said “I don’t think she has a tongue tie”.

The lack of specialist knowledge vs the pressure on mums to breastfeed is bonkers. So yes I know the NHS is on it’s knees but there’s a world of difference between saying “I’m not sure please see a specialist” and “no there’s definitely not a problem” so good on your DH for complaining.

@MagnoliaBeige @dontdisturbmenow I’ve seen it, it’s very obvious. The consultant said of the last 50 she has seen it’s the worst and that it’s very thick. I don’t get how it was missed. In the hospital I guess they were just busy. DH said he remembers them checking and they just had a quick look in, not the thorough investigation the consultant did. I trust her. He has the procedure on Sunday, so I’ll know more then.

Definitely complain. My oldest had a terrible tongue tie. The midwifes just kept blaming me my boobs where the problem nothing wrong with the baby. Thankfully the breastfeeding consultant saw me saw me trying to get a “perfect” latch then straight into babies mounts and found the tie.
It’s something I’ve insisted on having my other children checked for as soon as they are born. Don’t care if they have 9 fingers or 10 check the tongue.

I was made to feel like rubbish because my baby wasn’t getting food when really the medical professionals where being rubbish.

Yes I think it’s a good idea as it will hopefully help other parents and babies. As a result of a complaint by my DD and an investigation (though it was about a situation that resulted in the worst possible outcome) the way the results of a antenatal test were processed from then on were changed nationwide. It was the one positive thing to come from something dreadful. If you say nothing it may well be another family is left to try sort out something that should have been properly checked.

Thank you everyone for your responses. His division is on Sunday, so I’ll take his red book and get her to make notes as the consultant did so I have a record. After it’s done I will log it as a concern. I feel so uncomfortable complaining during g this time because I know how much pressure everyone is under and I all other respects the team has been amazing, I couldn’t have been happier with how they treated us and the birth wasnt the best, so I do feel guilty but for sure I wouldn’t want anyone else to go through this. If I hadn’t paid for this lady we may never have known and that bothers me.

I don’t think she is after money as I’d already paid her when I saw her and she hasn’t been trying to get anything else out of us. She was really good my DS and I trusted her, she cane highly recommended.

I will follow it through after his division. As I said in the previous update. The lactation consultant was shocked at how bad/thick it was and she contacted the hospital on our behalf to try and encourage them to do the provide her but they only do it up to 12 weeks and he is 13.

Musical all the best for Sunday! With my eldest, the improvement in the feeding was almost instant.

Unfortunately for me (and I was only 4 weeks in) the damage had been done and I slowly started dropping feeds. I do now wish I had carried on but my mental health was suffering. So i think you are bloody amazing!

The worst tongue ties are the ones they seem to miss. And it is so difficult. When you are constantly being told your latch is fine, you feel like screaming in pain, and they are not gaining the weight they should - well its all so stressful.

But my last 4 weeks of breastfeeding (after 2nd tongue tie op) were great & pain free.

@HesterLee

I am a nurse and am seeing the nhs on it's knees currently. But I absolutely agree with your husband that this should be raised and if a complaint is the only way this can be done so this problem is addressed within the relevant department(s), then so be it.

This.

I’ll start by saying I hugely appreciate and respect the nhs, I feel incredibly lucky to have free at point of contact access to healthcare and absolutely understand that there are reasons I’ve currently been waiting for an operation that should have been done over a year ago and have another referral that I’ve been waiting nearly a year on the referral list so far because there are such huge huge pressures on the system and the people in that system.

but in your circumstances if any one of those multiple professionals had just taken a couple of extra minutes to double check (properly) so it could explicitly have been ruled out (even if the attitude behind it was just to prove you wrong!) it would have been picked up.

This really should be highlighted to them and the relevant departments because sometimes even great people who do care and are good at there job slip and a reminder of what happened due to it helps to refocus the mind to not miss a step even if you think you can.

Comps,instead aren't always about getting heads to roll or compensation.

They are to highlight issues and we have a saying "we learn from our mistakes" because we do.

The issues arise when mistakes are made repeatedly. And without paper trails of everyone highlighting it eventually someone else's outcome won't be as positive as yours. As in you can get this solved.

OP I remember your post. Yes do bring it up with the hospital.

Can you get some help with how you are feeling now? You obviously aren’t a terrible mum. That’s clear from this and the last thread. Terrible mums don’t think they are terrible.

I was 40 when my dentist told me I have a TT. I’d got that far in life never knowing. I’d always questioned why I can’t eat an ice lolly like other people and now I know!

If it helps at all, both times I suffered as a result of incompetence related to hospital procedures it was NHS staff who encouraged me to complain so that the same mistakes weren't repeated.

I am a nurse and am tired of people putting complaints in left right and centre for absolutely nothing. I also hate when people try and sue the NHS. However this is different. I would encourage you to put in a concern under these circumstances. Multiple health professionals have missed your sons condition when a thorough check could have possibly picked it up (I don't know how easy tongue tie is to spot though, I'm a mental health nurse, physical health isn't my strong point!). I don't think there would be any harm in highlighting to them their error so that they can perhaps be a little more thorough in future.

@Wakeupin2022 thank you. DH keeps reminding me not pin all my hopes on this procedure and that he might still have a few weeks of exercises to get better and could still have tummy/reflux problems but I can’t help myself, I’m really hoping it has a big impact. My breasts have been going numb but I just figured that was breastfeeding? I’ve been so down on myself, blaming myself and thinking I’m a terrible mum that this has been a relief in a way!

Stories like yours are giving me hope that we have lots of happy breastfeeding days ahead if we can keep going!

Is a lactation consultant a doctor? Or maybe a midwife? Is there any pain relief used for the division?

@HesterLee and @AwaAnBileYerHeid thank you. I really don’t want to cause anyone working at the moment any issues, and if that many people missed it maybe there was a reason? But both me and DH saw it when the consultant pointed it out and it seemed so obvious to us, but that’s hindsight isn’t it?? I will make sure it is constructive and not a complaint and as I said I don’t want punishment or money or anything like that, just for no one else to go through it!