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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To complain about my baby's hospital treatment

21 replies

Lily484 · 24/02/2015 17:38

Ok this is a long one! At 5 days old at a routine midwife check in our local hospital my baby started to have what looked like a seizure. Thank god we were on site and went straight to A&E, once there a triage nurse hooked him up to monitor his oxygen levels, said they weren't dropping but that we would need to stay in, and wondered off. The fitting lasted 15 minutes, the oxygen monitor fell off and I was in the hallway asking her for a doctor. Heard her on the phone sometime later saying I was a very worried mum. He stopped fitting, consultant eventually came who was very good, told us to come get her if he started again, he did minutes later, I found her in the hallway, she pages her boss, the next thing he is covered in wires, a Cannula is inserted into his tiny veins and shell shocked we are moved upstairs to a paediatric ward. A series of what looks like fits continues, we are told very bluntly and very early on that there is no good outcome for a baby who has long and sustained seizures, and that he is definitely seizing. An emergency CT scan is organised for midnight, when we get into the room there is an argument between the nurse and the radiologists, our baby was supposed to be asleep but the nurses hadn't been told, they asked me to get him to sleep, so we decided to change his nappy they breastfeed him to sleep, when changing his nappy he weed on the blanket and my dh asked if there were anymore, the nurse literally snarled at us 'we're miles away from the paediatric ward, don't you think it would be a bit dangerous if I left you to get a BLANKET?'. The porter who was wheeling my baby's trolley then had an argument with the nurse about how long it was taking and walked off and left us stranded to take another call. When we got back to his room to wait for results I could hear them discussing him loudly outside our room, saying results didn't look right etc Etc. A registrar came in and started to introduce herself, I interrupted her and just said 'is it bad news?' to which she replied 'yes' she then told us he'd had a brain bleed and she couldn't say if he was or wasn't brain damaged yet. They were sending the results to GOSH for review. Two hours later another registrar appeared and said the scan had been viewed again by GOSH who said they were normal. Videos were also sent to GOSH of the seizures and we were they thought it might be a harmless condition called benign neonatal sleep myoclonus, basically an immature nervous system. The next day we were told they thought he might have a syndrome by a different consultant, that his movements were rhythmic and he was definitely seizing. They performed two failed lumber puncture on him and wouldn't let us be with him for the procedure. They also treated him by drip for meningitis and encephalitis as a precaution. He was so knocked out he wouldn't breastfeed, I was expressing watery blood, so I started bottle feeding him. He was then, thank god and the universe, transferred to GOSH where they performed a million tests, we're amazing, gave him a EEG while he was twitching and confirmed the diagnosis of Benign sleep myoclonus. We were seen by three top neurologist and neuro radiologist, they told us we had a perfectly healthy baby. We had to return to our local hospital for another day as they had also diagnosed him with a blood infection (GOSH told us he couldn't have one) and it turned out they had contaminated his blood sample. We were then ignored for a day, fighting for formula milk and eventually released with no explanation. I'm forever indepted to both hospitals because I believe they both used huge amounts of resources and things like ct scans and results happened incredibly fast. But there were so many errors and I sensitivities at our local hospital (moments after bring told out baby had a brain bleed the consultant asked where we lived and if we knew of any good nannies) while another consultant I felt treated us with a lot of suspicion and was blunt to the point of being aggressive. I'm so hugely thankful he is ok, now a healthy 6 months I feel I should just leave it be, but would also like to feel parents going forward in a similar situation would have kinder treatment and more consistency. I don't think I explained properly but we went from it being ok to bring catastrophic again for a period of four days. Should I write to them and highlight our experience? I've since had quite bad post natal anxiety.

OP posts:
Lily484 · 24/02/2015 17:41

That should have said where amazing (as in Gosh) not we're amazing!

OP posts:
sharonthewaspandthewineywall · 24/02/2015 17:43

I would write to them and ask to meet with those involved for a kind of debrief.
You also may be suffering a little PTSD, would you feel able to discuss with your gp or hv?
Glad all is ok though it sounds like a very stressful situation for you all x

Justabitoh · 24/02/2015 17:46

I absolutely would. If nothing else to put your mind at rest and to get a proper explanation of events.

Sorry you had such a terrible time.

Nomama · 24/02/2015 17:50

OK. In short, cos that was horribly complicated to read, let alone live through, you could write a letter thanking both hospitals for their efforts and then do a quick compare and contrast.

From a distance it sounds as though one hospital was being as honest as they could as results came in, but were let down by a lack of joined up thinking/staffing levels, leaving you in limbo and adding to your stress levels.

So I think you are right that, rather than a flat out letter of complaint, the idea of telling your story, illustrating the good and the bad bits, outlining how each experience impacts on new parents would be a great idea.

Copy to both hospitals, PALS, and as many other people as other MNers can identify for you.

RueDeWakening · 24/02/2015 17:52

I'd ask if the hospital has a specialist midwife counsellor, mine did and I saw her from 20 weeks in pg number 2 after my triplets were diagnosed with TTTS (only one of them survived), and then again throughout my following pregnancy as I was finding it so difficult/stressful and it was bringing back memories. She was really good at explaining what happened, what should have happened, and reviewing all my medical notes (there were three folders of them!). It was very helpful.

MrsTawdry · 24/02/2015 17:52

Flowers How absolutely traumatizing. I really feel for you and am SO glad he is fine.

I think you should definitely write to complain about that nurse who was so rude. No need. I had similar when my DD a few days old had a choking episode and asked for a bottle...we'd been rushed in and I had none with me...she huffed and complained about sending someone over to maternity.

Complain. And again Flowers I hope you all get over the horror of such fear soon.xxx

Messygirl · 24/02/2015 18:00

This reply has been deleted

Message withdrawn at poster's request.

Messygirl · 24/02/2015 18:00

This reply has been deleted

Message withdrawn at poster's request.

Lily484 · 24/02/2015 18:21

Thank you all, it had actually been very cathartic writing it down (very badly) for the first time, and hearing your advice and experiences, I'm so sorry for what some of you have been through too. I've been stuck in a bit of cycle of going over and over events for some form of closure. We had such a good outcome I feel really self indulgent still letting the anxiety take up so much of my energy, I need to accept that he is ok. I've found it really hard to view him as a healthy baby since. I will write to them and PALS and try and give them some sort of version of events rather than a formal complaint. I'm almost scared of someone talking me through the notes in case they spot something and the whole nightmare starts again, ridiculous I know, he outgrew the twitching / seizing at just over 3 months. I think if I could face it it would be incredibly useful.

OP posts:
ILovePud · 24/02/2015 18:26

That sounds utterly horrendous, so sorry for what you've been through and glad that your DS is doing well now. I would urge you to complain, complaining will force the trust to examine what went wrong and explain what they will do to prevent it happening again.

lougle · 24/02/2015 18:51

That sounds terribly stressful.

The first hospital did their best with a potentially devastating situation - they referred on to a tertiary hospital.

SummerHouse · 24/02/2015 19:16

God this is hard. We were given a very high risk of downs at our 20 week scan. For various reasons I believed it was so and I came to terms with having a baby with downs. When he came out without downs I thought I would feel like I won the lottery but I didn't. I could not shake the feeling that something MUST be wrong. I was totally overwhelmed with the responsibility. I was very anxious about everything and to be honest I did not bond with him till he was many months old. I can't fault the NHS so my experience is nothing like yours but I can only imagine how hard its been for you to let this go. I can only add that ds is now nearly 3 and he is utterly perfect. I just feel guilty for wasting those first precious months with him waiting for a terrible illness to be diagnosed. Hope you manage to find a way through this. If you have not had counselling that might help. Flowers

SummerHouse · 24/02/2015 19:24

Sounds like you have a plan. Do it. Be brave. Let them apologise if that's in order or perhaps explain or sympathise. I think this can only be a good, positive way forward. Good luck.

CallMeExhausted · 24/02/2015 19:49

To be absolutely honest, I would thank the hospitals for their care, if you feel you must say something, then move on.

Admittedly, I am saying this from the opposite side of the table. We took DD to her paediatrician at 3 weeks old for a weight check and mentioned that she had had blue spells that were brief and self resolved. DH and I were of the opinion that it was due to reflux (which she had already been diagnosed with and was being treated) and the paed agreed, but sent us to the A&E for assessment as protocol.

The first doctor who looked at her said she was fine, but he might as well do some tests as if he was humouring us .

Every test had a significant result - and the short answer was that she has a life limiting syndrome and the blue spells were as a result of a massive stroke that had destroyed 1/3 of the left side of her brain. She has had at least 2 more strokes since then, and has hundreds of seizures daily.

I understand that this experience has affected you, but you also need to understand that the generalists in a community hospital are not paediatric neurological issues, and babies can be VERY difficult to diagnose. Your interpretation of the nurse and porter's attitudes might have been coloured by the sheer terror you were feeling.

I am very glad they you did get to GOSH and they were able to get to the bottom of it all. As for the blood infection, samples do get contaminated, but the risks of sepsis, particularly in a very young baby, far outweigh the risks of prophylactic antibiotics whirl cultures are being confirmed.

Dognado · 24/02/2015 20:14

Good God, in a million years I would not write a letter to the first hospital thanking them for their help. I am so sorry you all went through that. Reading about your treatment at the first hospital honestly made me cry.

It sounds terrible and no wonder you're traumatised. It seems like the only good thing they did was refer you. I would take your (perfectly well written) account and talk to PALS about it. Honestly, I really feel for you, sending you a virtual hug.

Messygirl · 24/02/2015 20:25

This reply has been deleted

Message withdrawn at poster's request.

Cheby · 24/02/2015 21:27

OP I'm sorry you had to go through that. I would definitely contact PALS, and I would also definitely complain. The feedback will help them improve the way they treat families in the future and it may help you get some closure.

Blazing88 · 24/02/2015 21:34

I would complain. We had awful treatment at A+E overnight (not on the same level as you though) with our 8 week old and I wrote and complained.

Give them their due, they wrote back apologising and acknowledging that yes, they made mistakes. It did help.

hippo123 · 24/02/2015 22:12

Is PALS a uk thing? We have it in our local hospital. It's a place you can talk though things, read the notes, get explanations and they can learn what they did right and what they could improve upon.
Someone's once you have some 'answers' it is easier to move on, although as someone who had a newborn stay in hospital poorly I don't think you ever forget.

hippo123 · 24/02/2015 22:13

Sometimes not someone!

maggiethemagpie · 24/02/2015 22:31

I also suggest PALS (patient advice and liason service.) I used them to make a complaint when my consultant told me I would not have a relapse of my medical condition during my pregnancy and I then did have a relapse several weeks later at 36w.
pals organised an investigation, she denied any professional misconduct but did meet me to apologise for any 'misinterpretation' which is all I wanted really. If you use PALS you make the complaint through them, can be easier than speaking to scary doctors who may get all defensive and arrogant -although you can usually meet with the doctor in charge if you want to.

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