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.

I'm sorry you had this experience, you must feel very let down.

YANBU. Do complain.

A doctor missed my newborn sons tongue tie after I had specifically asked him to check (I have one and knew my mother struggled to breastfeed me). "No tongue tie" was confirmed on my notes... I struggled on thinking our substantial breastfeeding issues were my fault, only to notice a hefty tongue tie myself when DS cried (confirmed and then divided by IBCLC midwife). Luckily I knew what it looks like (my tongue tie is still intact), otherwise the situation could have gone on for weeks or months.

I mentioned it to a care coordinator and was asked by them to put in a complaint, in order to flag that the doctor in question needed some extra training. I duly did so and hope that the training was provided.

If you don't say anything, this will simply keep happening. Flagging issues like this will mean that training is provided and tongue tie won't be missed in other babies.

Haven't RTFT but two midwives, a GP and two lactation consultants all insisted my DD didn't have a tongue tie, in spite of my being certain that she did, from the feeding issues I was having. In the end I took her to a private oral surgeon who said that she did have a posterior tongue tie, snipped it, whereupon there was an immediate and significant improvement with feeding.

I don't know why this is so hard to diagnose!

I'm not normally up for complaining regarding the NHS when it's petty stuff. But this is a clear case of a mother/woman not being listened to. This is a systemic problem in the NHS. I'd definitely complain to flag this up. As you don't want it happening to somone else.

The other side of this is that tongue ties can often be overdiagnosed. They’re genetic and run in my family. I BF DC2 and it wasn’t until quite a while down the line that his tongue tie was diagnosed. It hadn’t actually caused an issue. Would it have, had I known about it? I don’t know. In past times, midwives used to separate them with a long, sharp fingernail, didn’t they?

I remember your other thread. I'm
Relieved you're finally getting some help! It may not completely resolve all your issues, but it might?! It's good you can get it done so soon!

I'm not surprised his Rocky start to life has exhausted you and zapped your confidence.

Hopefully getting this seen to will help you to start to enjoy him more & feel more confident, but it won't hurt to find someone to talk to if it doesn't.

& yes, definitely raise it with the NHS. Yes 'Covid' but if they do a consultation for other things, you should be able to trust their care. Help save others from this lack of care

Best wishes for Sunday x

I would complain.
The hospital told me something during my pre-appointments for my planned C-Section (enormous baby!) which turned out to be a complete lie.
When I found out a few weeks after my son was born, I made a complaint and the maternity ward had to update their procedures.
It didn't make any difference then to me or my baby but it made sure that they couldn't tell other mothers-to-be the same lie.

The NHS hasn’t adopted a clear diagnostic criteria for tongue tie. Almost no paediatricians and a minority of midwives can diagnose a posterior tongue tie reliably and very few are aware of the ways to assess how much a tight frenulum is impacting feeding.

A lot of babies have relatively tight lingual frenulums
A lot of babies have early feeding issues

While dividing an anterior tie seems to improve feeding in 90% of babies, the benefits of dividing a posterior tie is far less clear. At best 50% of babies show improvement in feeding.

There is limited guidance on how to assess a tongue tie and even more limited training.

Tongue tie division in some areas is endemic with little evidence of benefit in breastfeeding rates and at the same time other areas are not dividing ties in situations where it would be beneficial.

This isn’t a local hospital issue, it is a national issue. What is needed is clearer guidance on how to diagnose and treat tongue tie plus a clear referral process.

I hope division works for you and that things improve.

Yes, I would definitely give patient feedback. It’s the only way to bring these issues to the attention of the people in charge and will hopefully lead to an improvement in procedures. It could save other babies and parents a lot of pain and distress.

My son was 16 YEARS (!) old when diagnosed by the dentist. This was despite me bringing it up with midwives , GPs and Health Visitors. If medics had been more aware he wouldn't have needed a procedure under general anaesthetic as a teenager.

There is a petition or there was, to get qualified tongue tie practitioners on wards to check babies. I know so many people this has happened to as the midwives just dont have the training. It's a lot of training and I dont think they will do it. So complaining to the hospital wont achieve anything. It's a national issue. I think I'd write to my MP and get involved in a campaign etc and point out how it will improve breastfeeding rates etc as it may be more effective

I think you should always complain. If people don't then issues and problems never get fixed.

@OoohTheStatsDontLie

There is a petition or there was, to get qualified tongue tie practitioners on wards to check babies. I know so many people this has happened to as the midwives just dont have the training. It's a lot of training and I dont think they will do it. So complaining to the hospital wont achieve anything. It's a national issue. I think I'd write to my MP and get involved in a campaign etc and point out how it will improve breastfeeding rates etc as it may be more effective

This happened in the hospital i gave birth in 9 years ago.

It was snipped by MW whilst I was in post natal ward.

I have a similar story. It was 18 weeks before I got the dx and then it was divided at 19 weeks by he NHS.

Complain, it needs to be noted somewhere. I also had numerous doctors, MW and HV tell me DS was fine (he wasn't, neither was I, It was a horrific time) Until the infant feeding specialist took one look and I had a refferal by the next day.

@60schild

My son was 16 YEARS (!) old when diagnosed by the dentist. This was despite me bringing it up with midwives , GPs and Health Visitors. If medics had been more aware he wouldn't have needed a procedure under general anaesthetic as a teenager.

@60schild

Just wondering, if you don't mind me asking, what was the reason for your son having his tongue tie decided at 16 years old?

I ask because mine was discovered at age 3 and I'm now in my 30s. A consultant (who I saw for something else entirely) suggested that I should have it divided but when pressed for a reason, he could only come up with it being a hindrance if trying to assess for facial weakness if I ever had a stroke... that reason wasnt good enough for me, so my tongue tie is still intact with no impact other than not being able to stick my tongue out very far!

*divided!

When I had poor hospital care my GP urged me to complain, saying that articulate middle class mums ought to speak out to improve things for others who might be less confident about complaining. She said she had enough to do looking after her patients in the community without having to worry about them in the hospital's care.

@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?

I know that family members had theirs cut by the midwifes who used their fingernails 70 years ago. So yes it certainly has been diagnosed. Probably it was actually remedied more frequently using those methods than now.

there is no good evidence that tongue ties cause problems with breastfeeding. Here is a link to the Cochrane review: www.cochrane.org/CD011065/NEONATAL_surgical-release-tongue-tie-treatment-tongue-tie-young-babies

I know that family members had theirs cut by the midwifes who used their fingernails 70 years ago. So yes it certainly has been diagnosed. Probably it was actually remedied more frequently using those methods than now. That is disgusting. It certainly wasn't happening 50 years ago when I had mine.

[quote pyjamarama] there is no good evidence that tongue ties cause problems with breastfeeding. Here is a link to the Cochrane review: www.cochrane.org/CD011065/NEONATAL_surgical-release-tongue-tie-treatment-tongue-tie-young-babies[/quote]
You didn't see my nipples before and after 😂

[quote pyjamarama] there is no good evidence that tongue ties cause problems with breastfeeding. Here is a link to the Cochrane review: www.cochrane.org/CD011065/NEONATAL_surgical-release-tongue-tie-treatment-tongue-tie-young-babies[/quote]
For some babies this is true but it definitely depends on the baby and the tightness of the tongue tie.

Have you tried to feed a baby with a tight TT? I have a 90% and then reattachment to a 60-70%. I watched as after his reattachment at 4 months his weight gain dropped down the graph lines over several months. I was a milk donor due to excess milk supply and pumped regularly so knew the cream level of my milk.

I watched as my son struggled with weaning to move food around his mouth. He had surgery at 9 months, within 3 weeks his weight had gone from the 9th to the 25th percentile by 12 months he was at the 50th........only change was TT separation.

So unless you have had to feed a baby with a TT, watch them struggle and have difficulties and pain with reflux/gas then you have no appreciation for what BF mothers with TT babies go through.

My Dh had his tongue tie snipped in his 50s.

pyjamarama its not my experience.

From extreme pain when breastfeeding, to constantly getting told your latch was correct, to getting mastitis, to getting a 2nd snip, to feeding through mastitis, but antibiotics and tongue tie meant it was no longer painful.

It really did make a difference to me.

@AlexaPlayWhiteNoise

I know the feeling... my nipples are actually permanently scarred and slightly misshapen as a result of the early days of breastfeeding with a tongue tie (that scarred and had to be re-divided)... DS is still going aged 2, so I have yet to see whether the shape will return to normal...