Sorry but I need to work out if I am being unreasonable and have a question for BHF and for everybody on this forum.
We had known for years that my daughter who had mild marfans would need aortic root replacement for years. She was under the care of Addenbrookes and Papworth for years and they looked after her brilliantly. Mid 2019 they said let's plan for surgery summer 2020. We'd looked into the alternative for root replacement - PEARS - but Papworth didn't do that so Nov 2019 we switched to another hospital. We realised there would be a delay due to COVID and weren't over worried until she wasn't feeling well on the afternoon of Oct 21st 2020. She and I realised she'd suffered an aortic dissection. We got her into Bristol Royal Infirmary (BRI) and try as they did they couldn't save her. We lost her in the early hours of the following morning, aged 29.
Before that she had had an Echo at BRI in early August requested by her Lung Specialist when he said her lungs weren't the cause of her tiredness and discomfort. This was sent to the other hospital. They now say the Surgeon reviewed this on Sept 3rd and uprated her to P2, Urgent, Needing surgery within 4-6 weeks which is why they scheduled her for surgery on October 28th. We were pleased to get the surgery date even though the Nurse that informed Sarah told her that it could easily slip, they weren't back to doing that many operations. We knew the surgery was needed, that the ongoing delay was not good but we were not over worried about her condition. We did email the Surgeon asking whether the PEARS sleeve might not still fit. They did another Echo in early October to 'check dimensions' and shortly after advised Sarah that she had a firm date for surgery on Oct 27th. They now tell us that that Echo would have confirmed her as P2, Urgent.
BUT at no time did they tell us she was in more danger than we thought, that she had been re-rated as P2, Urgent nor anything to help her protect herself. We say that they should have warned us and that we and she maybe could have done more to look after her, protect her e.g less strenuous exercise, monitored vitals, seen GP, had a heart specialist in Bristol check her over, watch her for fluids, take water tablets etc. Actually never heard of idea of controlling fluids, taking water tablets until GP prescribed them for my wife as first step in her response to wife's deterioration and it was abdominal fluids that complicated her emergency surgery!
The Other Hospital Management have been great in investigating Sarah's death, discussing things with us and I am sure in improving things internally but are saying that the Surgeon / they are not at fault for not warning us and that it would have made no difference if they had. We disagree.
My question - Should the Hospital have warned us Sarah had gone to P2, Urgent and in need of the operation within 4-6 weeks? Should a hospital warn anybody that they realise has deteriorated that they have so they can look after themselves better and seek the help they may need? More responses the better, and while interested in anybody's own experiences will treat as confidential - just going back to the Hospital with a summary and the statistics.
Thanks, and you all take care yourselves ... 🙂💜 .... purple as that was Sarah's favourite colour!
ICD or not ICD
Sorry to be leaving.
