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.

Definitely point out that it was missed and that your son has been let down.

We had the most opposite. I was led to believe my baby had tongue tie and I fretted so much as no one was doing anything about it. Later a GP saw a photo of him when he was small and he never had it.

Definitely complain

I remember your threads and thinking "you're so right - there's something wrong with that baby". I'm so glad you've had it addressed now and I don't underestimate the pain and stress it has caused you.

Yes complain but don't expect too much in the way of a response.

Good luck with getting back on track I'm sure you are a great mum who's done her best with a baby with an undiagnosed medical condition.

I'd complain op.

My ds had all the regular 'checks', but we had a really crap bf journey - poor latch, colic, reflux and saw countless midwives and hv for support, loose nappies, rubbish sleep because he was constantly hungry, and big PND, yet his 90% tt was only identified by the dentist the first time he had a proper look at about 14 months (other than the cursory glance when I went for my check-ups).

By which time of course it was 'just a snip'. The GP would not refer us until he was over 3, by which point he had to have a general anaesthetic.

I must have seen 20 professionals in his first month and they all missed it.

Please don't let another baby or the parents go through this x

I am so sorry you experienced this. I went through similar 7 years ago, and unfortunately very little progress seems to have been made in this area in that time. It’s still a very obvious and easy to fix issue that causes all sorts of feeding issues; it is under diagnosed and often dismissed by midwives. It’s worth stating that the majority of midwives do not have sufficient specialist feeding knowledge to identify and treat TT, nor do HV and GP, but access to an IBCLC qualified lactation consultant is difficult. It’s not good enough and things won’t change if nobody complains.

I've heard via DD of several of her friends who had missed tongue ties (& she hasn't got a lot of friends with kids!)

There seems to be a default setting among HCPs that tongue-tie is really uncommon and massively obvious, rather than something to check for carefully whenever a new baby is having major problems latching - & particularly, though not only, when it's not a first-time mother, but one who's breastfed successfully before.

Yes, he should complain! and if he's feeling really energised, maybe start a petition about it. The first few days/weeks can be hard enough without finding there was something that should have been detected and fixed.

Regardless of covid it should have been checked properly. I’m frontline NHS and it’s scary how many Nhs departments and staff are literally hiding away not doing the job they are paid for.

Get PALS involved.

I think you should complain but you have up to a year from the incidents to do so. I had to complain about the referral procedure for home births but didn't actually do it until DD was 10 months old and I could do it objectively as I was too overwhelmed by everything at the time. If people don't complain they can't improve. I don't think mine got anywhere I got an apology but no new process in place which I had hoped to achieve. Basically great home birth but DD needed to be seen by a Dr at 1 day old as the midwife when doing her 24 hour health check identified she had bilateral tallipes and a strange lump. Maternity refused to admit us as a home birth meant we weren't there patients, Paediatrics assessed her but said they aren't really the right people for new borns as they never do these checks. And after giving birth 24 hours earlier I was traipsing round a hospital sat on a rock hard plastic waiting area chair still trying to establish breastfeeding. Mistakes happen, they need to know about it.

I wrote a letter of concern to my GP a few years ago over the way a severe burn was treated on myself.

I had to see GP and said I wanted her not to deal with injury in the same way for another patient.

I like yout DH wanted the issue addressing not a claim for cash.

I think your DH is right and you should raise it. Awareness of tongue tie has been improving, but it isn't good enough yet. There's some good practice out there - my DD1 (nearly 20 now) was picked up at 10 days old by our community midwife and monitored. Her tongue tie was very minor and resolved by itself, but we had the pathway there in case it was needed. On the other hand I've had friends in the same area who were in exactly the same position as you. We will never get consistent good practice if we don't raise it again and again and again.

I would complain. One of my grandchildren had a severe tongue tie that was not picked up for 14 weeks despite their mum asking for this to be checked before discharge and several times subsequently due to baby having difficulties latching and feeding and it being very painful. Had to wait a further 6 weeks before procedure was done - it took seconds and made a difference almost immediately. By contrast baby of a friend in a neighbouring city had tongue tie diagnosed shortly after birth, had the procedure at 2 days old and sorted.

We had exactly the same issue OP - DD was in scbu for a week when she was born, struggled to latch but put it down to her being prem. Continued to struggle when we went home, was told by multiple midwives, health visitors and feeding supporters at the local breastfeeding clinic (where I was a weekly fixture with my own box of tissues as I would just sit and cry) that the latch was fine. My own DSis who’s a midwife also thought there was no issue. I ended up switching to bottle feeding at about 7 weeks due to pain, mental health issues (me) and concerns over weight gain (DD) but the symptoms continued, so I put my foot down and demanded a referral to an nhs lactation consultant when DD was 2 months old. The consultant took one look in her mouth and diagnosed a severe posterior tongue tie, which is exactly what I had self l-diagnosed.

The sad fact is that there is a woeful lack of specialist training to detect tongue tie in newborns. There are various things that need to be checked with a physical examination of baby’s mouth (the consultant we saw had a checklist of things she was looking for). Midwives, health visitors and gps generally don’t have this training so it gets missed, which is scandalous when you think how much stress and grief it can cause both mother and baby. My own sister was mortified that she had missed it, but she just didn’t have the training.

Apologies for the essay but this so something I feel really strongly about. I would write a non confrontational letter to PALS just explaining your experience and requesting more training so it doesn’t happen again. Sadly one letter is unlikely to make much of a difference but at least it’s on record.

Yanbu. It's incredibly common for this to happen. Some forms are really difficult to spot. And sadly the training on this is lacking.
Likewise the guidelines for snipping or not, are imo antiquated as the impacts can be so significant. Be that speech, feeding, and even kissing when an adult.

@MusicalTrifleMonkey

So sorry to hear of this. The idea of getting a letter from the person dividing is an excellent one. You need to write to the hospital [keep a copy] by letter with all the documentation and make sure it is marked "complaint" otherwise they may say "you did not complain". There is a department at our local hospital [Addenbrookes] called "PALS" ["Patient and Liasion Service - or something] which makes sure that things get monitored and done. Your hospital may have something similar. Otherwise the "Chief executive" with copy to the health authority.

Please be very wary of private lactation consultants making money cutting tiny babies tongues. If you’re worried about your baby’s feeding and latch and want to pay for a second opinion from the 3 health care professionals that told you it doesn’t need doing, then pay to see a private paediatric dr. Not someone willing to cut a 13 week old baby’s tongue without trying alternatives first. I’m sure my comment will upset some people who’ve had it done to their children but this is something that should only be done by a paediatric surgeon. There is a lot of information online about the worrying trend in this.

You must complain. You have a duty to do so.

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?

So five people missed the fact that your son had tongue tie? Two of which just dismissed your concerns on the spot? That really isn't good. As a result, your son has been left to struggle to feed and you have been inconvenienced by needing to drive two hours and get the treatment done privately.

I think in this situation, a complaint does need to be made because that is not acceptable and it should not happen to anyone else.

@dontdisturbmenow

You had 3 nhs professionals saying it is not an issue but going on what a lactation consultant said? Have you seen the private consultant yet?

Either you have 3 incompetent NHS professionals in which case it certainly needs addressing and a complaint is definitely justify or the lactation consultant is the one giving wrong medical advice.

dontdisturbmenow raises an important point. Presumably you are paying for the lactation consultant's time and to undertake the division. Many Trusts do not advocate for routine checking for tongue ties, though it should be part of the wider assessment when there is poor weight gain so, on that basis, yes I would raise it.

Please complain like you said there are ways and means .A well put together letter to PALS will do it.
You are doing it for the right reasons your not compensation chasing it will be reviewed and could help someone else .

Complain, but don’t ask for compensation

My DS had his tongue tie snipped when he was 4 weeks old. They however did spot it in hospital but didnt refer us to the tongue tie clinic. Didnt mention it to me, my midwife thankfully referred me on day 10 as baby was not happy , my nipples were blistered as he was constantly trying to feed and i was in pain. I still had a specialist come to my home to review us and finally had the procedure. It was a life saver....so for me I would send a complaint. Three months of managing this situation must be horrendous, your likely exhausted and baby wont be comfortable either. Hope everything settles down once the wee one gets it snipped

It's so hit and miss. DS2 had his tongue tie snipped (healed badly; thick fleshy scarring) surgeon actually put him under GA did a tidy job which really helped. NHS.

Tongue and lip ties are quite often missed, but also many health professionals don't actually believe in doing divisions anyway. My youngest was born with a lip and a tongue tie which made the early days difficult. But my local trust apparently don't do the procedure as its not deemed necessary and not always actually beneficial

I'm not saying you have grounds to complain though. Its just not much may come from it

Had similar with my DS, but they said it was a sub-mucosal tongue tie (diagnosed at 16 weeks) that couldn't be cut. To be honest, looking back, I'm not convinced that the tongue tie was the cause of all the trouble.

So hard to know what to do when baby is like this (mine went from 98th percentile to below 25th, but always gained a little weight). The good news is that things will get better - in DS's case he made a big improvement from about 5 months old - he wasn't an easy baby, but he was much, much better. Played catch-up and went back to his 98th percentile. It will get better!