To make a complaint re: health visitor/hospital

[Chops2016]

I have been mulling this over for a couple of weeks now and I am unsure whether I should make a complaint.

My DS (only child) is 9 months old now. He is a very happy and healthy boy, however the first few months of his life were traumatic and he was quite ill. I wanted to breast feed him so went ahead with that. I struggled to get to grips with it but figured that was because I was a new mum and I had never done anything like this before. I spent many a night phoning breastfeeding support lines when DS seemed to be inconsolable and wouldn't settle to feed. I asked for advice from the HV and followed everything she recommended. I took DS to be weighed every 2 weeks and his weight was slowly going down. I voiced my concern to the HV and she just told me to express more to increase my milk supply, which I did. At this point I either had DS or a pump attached to me 80% of the day. DS continued to lose weight.

This continued, and I continued to flag up my concerns. I got the same advice from HV - always saying its my milk supply - pump more. DS was about 8 weeks old at this point. I took my him to the GP and he commented that yes he looks very thin and referred me to a paediatrician - the earliest appointment was in 3 months! At this point I was tearing my hair out with worry, I could see DS's ribs when I changed him and he had loose skin on his arms. I ended up taking him to A&E. They weighed him and he had fallen into the 0.4th centile. They did blood tests and found he had abnormal liver markers. He stayed in hospital and I started giving him formula top ups on top of BF at the doctor's suggestion. Ultimately I ended up just switching to formula and he improved dramatically. None of the doctors could tell me why he had been losing weight or what was wrong with him. Upon admission I asked the doctor that first saw him to check for tongue tie (as a friend had suggested perhaps it wasn't my milk supply), she gave a cursory glance at his mouth and said no, he doesn't have tongue tie. The next few weeks we were in and out of hospital constantly for blood tests, scans and appointments with various health professionals.

Over the next few weeks DS continued to put on weight and get better. He was on formula and thrived. His liver function slowly improved and eventually normalised and we put it all behind us. Until a couple of weeks ago.

I took DS to be weighed and I mentioned to the HV that his tongue seemed an odd shape at the tip, was that normal? It is like an inverted heart shape with a little notch at the end (I think it looks very cute). She has a look and just breezily comes out with "oh yes, he has tongue tie". I just didn't know what to say - all the blood tests, hospital stays and worry we had gone through! I couldn't believe it.

So to my question; I am in two minds whether to complain about what my son had to go through in his first few months of life, all because nobody thought to check for tongue tie, and the one health professional I specifically asked to check for it missed it. I don't expect compensation or anything daft like that, but I really don't want anybody else's baby (or any parent!) to have to go through what we did. I want to raise awareness for health visitors and health professionals to check for tongue tie as soon as a BF baby starts losing weight. Not only was this awful for DS (he must have been so so hungry, and I feel utterly ashamed and guilty for that), but I lost count of how many blood tests, scans and appointments with consultants he had which will have been an unnecessary strain on the NHS.

If I do complain, who do I complain to? The HV? The hospital? Both? Are HV employed by the NHS?

I thought I was being the best mum I could be by following the advice the HV gave me (and feel like a total idiot for that now). In hindsight I should have just put him on formula as soon as his weight started getting low, but like a fool I persevered with BF as I was advised.

I'm a bit worried about this thread getting derailed into judgement of me not just putting him on formula earlier (or BF Vs. formula), please don't post if that is all you have to say, trust me you can't beat me up any more than I have myself about that.

I would definitely complain, sounds like nobody was taking you seriously until your DS was obviously suffering. IME it happens far too often with first babies - everyone's geared up for you to panic at the smallest thing, so they dismiss legitimate worries as nonsense even when it's not.

I would definitely. My friends baby lost 11% in first week and she was advised to supplement with formula as well as expressing to boost supply. Shocking that you weren't told to give formula and support.

And don't beat yourself up about not putting him on formula sooner. Breastfeeding is so heavily pushed, with inadequate support, it's not surprising the HV told you to keep going. The amount of stick I got for FF DS1 was unreal.

Complain to PALS patient advice and liaison service. The email address should be on the trust or hospital website.

Sorry for what you went through I'm glad he has shown improvements

Yanbu. As already advice do it via PALS. It the only way the department will learn from mistakes.

Yes I have experienced almost exactly the same.DS spent his first few weeks in SCBU and was discharged a day after they took out his NG tube. We struggled with BF and I was still giving him EBM at 6 weeks. He was diagnosed with Reflux while in hospital, but he still struggled with feeding and his weight dropped off the scales.

He had three spells in hospital and not one fucker noticed he had a tongue tie. I had never heard of it, and it wasn't until I saw someone on my Mum forum mention it that it clicked. When I mentioned it to the HV she breezily said "oh yes he does have one but he's coping now"

Its such a basic thing to check and correct and I think should be part of the newborn tests

Go through your hospital's PALS.
I did it when my second baby was born.
I knew something was not right with him. He struggled to feed (BF)and would scream in pain at every feed, then for hours afterwards. One day, he refused to feed for 8 hours and just screamed and screamed so off I went to A&E. No one was listening to me and just kept telling me that medically speaking he was healthy. I was really struggling emotionally as I knew there was something wrong with him and no one was trying to help him....so rather than trying to get to the bottom of what was wrong with my baby, the Drs started pulling my husband aside and essentially saying I was a nutcase who was imagining it
After sitting on the floor in front of the door with my baby and refusing to leave the hospital until I saw a more senior Dr, a paediatric consultant came and within a few minutes of observing a feed, he suggested my son has CMPA, soya allergy and severe acid reflux. He was right. Since putting him on hypoallergenic formula and a cocktail of drugs, he is like a different baby!!
I didn't hold any punches with my formal complaint

Yes complain, what an ordeal for you! How are you both going now? I had ptsd from experiences when ds1 was small and thought I was going mad.

Absolutely complain, PALS sounds like a good place to start. As you say, you don't want anybody else to go through this. Also, an apology might make you feel a little better (it would me)

Complain to PALS that's what they are there for am glad you got your baby sorted out in the end. I hate the way doctors and HV's try and fob you off and think they know better than you do you know your child better than anyone and you know when something isn't right.

mybreadiseggy am shocked at how they treated you and your baby thinking you where a nutcase because they yet again think they know better than you do. Am glad you got your baby sorted out in the end. Sometimes it takes kicking up a massive fuss just to get them to listen to you.

Chops2016, what yo and your son went through is horrendous and totally unnecessary. Definitely complain via PALS. It must have been terrifying for you and you'd think it would be one of the first things they would check for, never mind the fact that you specifically asked about it!! I hope your son is thriving now. And dont you dare beat yourself up about any aspect of this. You clearly did your absolute best and the medical professionals let you down.

Please do complain- my baby's story was very similar, but a midwife pushed DD's head onto the breast resulting in her refusing the breast for weeks and we had to syringe/cup feed instead (she couldn't take a bottle either). I think switching to syringe and cup feeds probably stopped DD from losing so much weight and becoming ill from it.

Anyway, I asked and asked if she could be tongue tied, midwives, HVs, GPs all denied it, but she got a referral to the infant feeding coordinator for something else and they said she had a moderate tongue tie before they even assessed her for the problem we were referred for!

I was too unwell myself to persue a formal complaint at the time and I think it's a bit late now as I don't remember enough details. But I'm certainly going to be more on the ball with number 2!

Yes do.

This happened to my son he had a severe tt with zero movement undetected epdesoite me pointing it out.
He was also readmitted because he got very very sick

His admission was just so they could watch how I behaved towards him luckily I was sensible enough to get the infant feeding coordinator to meet me there and she found the tongue tie and massive infection.

I have not and will never forgive any one of the 12 different midwives who came into my home and treated me like I was intentionally starving my child despite a lot of evidence suggesting otherwise

Someone in my area had a similar problem and has raised it with the maternity services to get this onto the list of things checked at the newborn check. It's disgraceful that this relatively common and easily treated issue is being missed.

In all likelihood your HV simply hasn't been trained to check for tt so was unable to spot it and the same may be true of the Doctor.

Raise it with PALs and if you can, like the person here, get the local press or social media involved to get this changed.

Please please complain.

It's such a simple thing to check for, and it really should have been one of the first things they looked at.

Incidentally the IF lady (medically qualified and employed by the hospital) located both issues less than 5 mins AFTER a doctor had told me he was fine and the issue was me.

Every time I raised it after I was told that it was important "that I got over it and drew a line"

There may be a Healthwatch in your area, they will tell you who best to complain to, and how:

www.healthwatch.co.uk

There will be an infant feeding lead in your area - or there should be. Call the maternity unit and ask who it is. Write to her (it's usually a woman) and just say what happened. It does not have to mean a formal complaint - though it can be. I would like to think they would invite you in to talk about what went wrong. There 's no one person to blame for your awful story - it's a collective lack of knowledge which has led to great unhappiness all round. It needs to be addressed. Good luck.

Yes they're employed by the NHS as health visitors are all nurses or midwives.

Hi chops was your milk supply assessed? Breast tissue checked? Have you had thyroid disease?

Part of the problem is that midwives, doctors etc aren't trained in tongue ties anymore. The prevalence of bottle feeding in the 70's, 80's and 90's means that the skill has largely been lost. I had to kick up a fuss to have DS2's tie snipped - it was so obvious even I could spot it - and all the midwife said was they didn't normally do anything about them anymore and it didn't look that bad to her. When I took him to the dental surgeon to have it done he said it was actually very severe and he had an upper lip tie too. This was when DS was only 3 days old thankfully and even then I was on the verge of giving up breastfeeding.

An older midwife said that she remembered in her early training etc that babies were routinely checked and snips were done in hospital by the midwives if one was obvious. But as it matters less with bottle feeding them it fell from importance. I know several friends who struggles to breast feed and had tongue ties noticed later on in their babies.

I think it's probably at the root of a vast number of breastfeeding issues to be honest and agreee it needs to be given more attention.

Hi Chops, I work for PALS and just want to advise you (as many others have) strongly to make a complaint through them at your local hospital. They will conduct an investigation and most likely draw a learning point from it at the very least. It's definitely not something you should let them get away with.

They are employed by the NHS but you will need to complain to their individual employing organization - it isn't as simple as just 'the NHS'.

So for the hospital you would be complaining to the hospital. For the health visitor you would need to know who employs and manages the local health visitor. Your local Healthwatch can probably tell you this.

Thank you for all the replies and support. I will look it PALS (I hadn't even heard if this) and try and find out who the infant feeding lead is in my area.

Its reassuring to unanimously hear that I'd be doing the right thing to complain. I didn't know if I would be taken seriously.

I'm so sad to hear everybody else's similar stories, this really shouldn't be so common. Its so easy to check for and missing it causes so much pain and upset. I still can't look at photos from when DS was 8-12 weeks old as he looks so malnourished and I still feel so guilty and responsible for him getting like that. Hopefully in time that feeling will go away. And if I got an apology that might help too.

HCantThinkOfAUsername we are both doing brilliant now thank you, although I'm still on ADs from PND (which strangely enough started about the time he was in and out of hospital!). He is now a healthily sized lad and up to 75th centile. Starting to try and stand up on his own and generally being an all round awesome little dude 😁

What an awful experience for you. Definitely complain and don't beat yourself up. You're doing your best and you sound like an amazing Mum x