Desperately trying to understand my mums death

[Help_needed1]

I am desperately looking for advice, my mum died in July 2018, I will try to be concise, she was admitted into hospital in March 2018, with sudden onset respiratory distress, she suffered a cardiac arrest and was admitted to general critical care, initially they struggled to intubate her, we then discovered that she had a large multi nodular goitre on the part of her thyroid she had, she had a partial thyroidectomy in the early 70’s. It was initially through her goitre had compressed the trachea but they back tracked from that, they performed surgery and she had a tracheostomy, and we were informed they flipped the thyroid back. She was then woken and long story short she recovered and was discharged in the middle of May 2018. She received little to any tracheostomy care in the community, and she started to struggle with granulation and mid July she was admitted for early decannulation. They decannulated on July 25th, she was discharged July 26th and unfortunately she suffered a repeat event on July 27th. She suffered sudden respiratory distress, 70 mins of oxygen deprivation and three arrests, mum was unable to survive. She was admitted back to critical care where we switched of life support two days later.

The case went to coroners, and they finally ruled in April this year with the following

1a Hypoxic brain injury

1b Cardio-respiratory arrest

1c Multinodular thyroid goitre

The most likely cause of death is upper airway obstruction secondary to compression by the multinodular thyroid goitre. One possible mechanism would be sudden enlargement of the goitre secondary to bleeding within a cystic component of the goitre leading to acute upper airway obstruction.The hospital unfortunately dispute the findings of the pathologist and insist mums case will forever remain unknown and they say they don’t know what caused her death, one possible cause they say could be tracheamalcia, but refuse to commit to anything. We are now left with so many unanswered questions and a post mortem we don’t understand.

Is there anyone we could explore this further with, I appreciate I have only given a very quick overview, we are prepared to pay for a consultants time if we could reach more understanding on the conditions surrounding our mum, any advice or contacts gratefully received

Thank you

[Marz]

Am afraid I do not have any helpful suggestions. Having watched The Cure on TV last night about the lady who battled for justice after the death of her Mum in hospital - it would seem almost impossible to take on the NHS.

I feel for you and know that many of us here have experienced shocking treatment for our thyroids and beyond. Also our Mums ...

It would seem the coroner acknowledged the thyroid involvement but as we know the medical profession rarely do ... x

[Help_needed1 in reply to Marz]

Marz, thank you for replying, I hope one day to find someone who can help us at least understand

Wishing you a blessed and safe Xmas XX

[MissGrace]

This sounds terrible, truly terrible. From what you say, it seems they had the chance to stop this and let it happen again. I don’t know what to suggest, but I cannot even imagine how awful this must have been to bear. My heart goes out to you. xxx 🤸🏿‍♀️🥛

[Help_needed1 in reply to MissGrace]

Thank you, it’s been utterly devastating and yes we agree, both events near identical, but they refuse to agree with coroner or even tell us why they think the coroner are wrong, thank you for your kind words XX

[SlowDragon Administrator]

As a close relative you should be able to access your Mum's health record

nhs.uk/common-health-questi...

As she had a part Thyroidectomy, was she on Levothyroxine after this?

Thyroid levels should have been tested annually

Possibly she was under treated on too small dose of Levothyroxine (or not on Levothyroxine at all) causing goitre

[Help_needed1]

Thank you, we’ve got her medical records, but only for the period between two hospital visits she wasn’t on any thyroid medication, We/she didn’t know about the goitre until the first event, we’ve always wondered why the hospital didn’t perform an emergency thyroidectomy, she was dead within 24 hours of taking the trachy out with some sort of sudden catastrophic obstruction of the airway, we don’t understand why the hospital refuse to accept the post mortem, could her death had been prevented if they had performed a thyroidectomy? Sorry for all the questions you may not be able to answer 😐

[SlowDragon Administrator in reply to Help_needed1]

I would have thought you should be able to get medical records from GP too

She should have had thyroid levels tested annually after having half thyroid removed

Often people would need Levothyroxine prescribed if the remaining half is struggling to maintain Thyroid levels

Looking for high TSH and low FT4 test results

[cjrsquared]

A big question is did the hospital organise any imaging prior to trachy decannulation in light of the original difficult intubation. Intubation difficulty is graded from 1-4. If there was a question about her airway then ENT should have investigated further, this also includes an endoscope if there was over granulation and the suspicion of tracheal malacia.

Sadly tracheostomy care in the uk is abysmal. NCEPOD published a report in 2014 which identified many of the short comings and made recommendations. These haven’t become national guidance but most hospital trusts should have a local policy. It may be worth asking the hospital trust about this as they may have breached their own policy which might be helpful. I suspect that you may have to go the legal route to get a full explanation or evaluation of events.

I am so sorry that the establishment has closed ranks, this is the medical defence union stance to reduce medical liability, but I suspect many families accept that mistakes may have been made, and they just want to know the truth. Nothing will bring your mum back but it might help to know strategies could be put in place to stop this happening again.

I wish you well and hope that you get some answers.

[Help_needed1]

After first event she was intubated with a paediatric tube, due to swelling, they concentrated on frozen vocal cords and although they discovered a large goitre told us it wasn’t a problem now it had been flipped back, but it was thought vocal cord palsy was due to damage during intubation, as they did recover and her swallowing became normal, they did do FEES and tell us the trachea was clear, at no point was the goitre considered a problem, and trachy was removed with no consideration for its management, they hospital have closed ranks its been an arduous and painful journey, one that has seen 21 apologies for failings in their complaints process but no recognition for failings in thyroid or goitre management, we do have notes from a ITU consultant who records his thoughts that an emergency thyroidectomy should be performed. I suppose I don’t understand enough about the cystic components of the multi nodes? Is it rare? Could it happen twice? Is this something the hospital should’ve considered following first event? Because it wasn’t cancerous I assume they didn’t want to touch it? Is that standard practice? Thank you for your suggestions I will follow them up x

[Marz in reply to Help_needed1]

Click Reply - the Blue button when responding so the member receives an alert and is informed of your response 😘 I know easily done - have done it myself !

[Help_needed1]

👍

[Marz in reply to Help_needed1]

Ooops - you need to click Reply beneath the post to which you are responding - otherwise you are responding to yourself !! X

[Help_needed1 in reply to Marz]

Got it! Thank you 😊 rookie mistake

[Marz in reply to Help_needed1]

We have all been there and after 8 years here I am still learning 😍

[LunaMa]

Hi there - I’m very sorry to hear about your mum and the awful way in which she -and you - have been treated.

Have you tried to discuss your concerns with the Coroner? When our mum died unexpectedly in hospital the Coroner was listened to our worries about mum being given the wrong medication and, as there had been an almost identical case at the same hospital around the same time, wrote to the hospital raising concerns. She was also very helpful in explaining what had happened medically but in non-medical terms.

I hope you get the answers you need and find peace x

[Help_needed1 in reply to LunaMa]

We’ve just been told to discuss concerns with the hospital 😢

Thank you x

[Help_needed1]

Oh bless you, I really do empathise with you, sounds like you’ve really been through it, great advice, really hope you get the answers you are after xx

[Help_needed1]

Thank you 😊