Prevention of Future Deaths reports · 2021

Alice Pettersson

Regulation 28 report to prevent future deaths, reference 2021-0267, written 10 Aug 2021. A coroner writes one of these when an inquest reveals a risk that could cause further deaths unless something changes.

Date of report10 Aug 2021
Reference2021-0267
DeceasedAlice Pettersson
CoronerDr Shirley Radcliffe
Coroner areaLondon Inner (West)
CategoryHospital Death (Clinical Procedures and medical management) related deaths · Child Death (from 2015)
Organisation namedChelsea and Westminster Hospital NHS Foundation Trust
Sourcejudiciary.uk record · original PDF
Responses publishednone published

The report

Text extracted from the PDF text layer. Reproduced verbatim, including the scan's own layout.

REGULATION 28:  REPORT TO PREVENT FUTURE DEATHS 

REGULATION 28 REPORT TO PREVENT FUTURE DEATHS 

THIS REPORT IS BEING SENT TO: 

Secretary of State for Health and Social Care 

1 

CORONER 

I am  Dr Shirley Radcliffe, Assistant Coroner,  for the Coroner Area of Inner West London 

2 

CORONER'S LEGAL POWERS 

I make this  report under paragraph  7,  Schedule 5,  of the Coroners and Justice Act 2009 
and  regulations 28 and 29 of the Coroners (Investigations)  Regulations 2013. 

3 

INVESTIGATION and  INQUEST 

On  7th  February 2020 I commenced an  investigation into the death of Alice Beatrice 
Pettersson,  then aged  8 months.  The investigation concluded at the end of the  inquest 
on  1oth  June 2021. 
Medical Cause of Death 

I (a)  Hypoxic lschaemic Encephalopathy, 
1 b Cord  compression, 
1 c Achondroplasia 

How, when, where Alice Pettersson came by  her death: 

Alice  Beatrice Pettersson died on  25th  January 2020 at Great Ormond Street Hospital 
London 

Conclusion of the Coroner as to the death: 

Natural Causes 

4 

5 

Concerns of the Coroner: 

Achondroplasia is the commonest type of skeletal dysplasia with  1 in 20,0000 individuals 
affected. 
These infants are at risk of sudden infant death  most frequently attributed to  foramen 
magnum stenosis (FMS). 
There is  no  designated referral  pathway for children with achondroplasia and general 
paediatric clinical teams are  not always aware of the associated risks or clinical 
scenarios which  should  prompt immediate referral to centres of excellence. 
No  NICE or other national guidelines are currently available for the early evaluation and 
manaQement of infants and children with Achondroplasia. 

 These children  need access to centres of expertise as soon as a diagnosis is  made or 
suspected.  Parents need  to  be informed about the risk of sudden death due to foramen 
magnum stenosis and  provided with training  in  basic life support and the use of lie-flat 
car seats. 
Clear national guidelines should be available to  local services with  information on  how to 
contact and  urgently refer to expert centres for achondroplasia.  MRI  scanning and  sleep 
studies need to  be  undertaken promptly.  50% of infants with  achondroplasia have 
radiological evidence of FMS and  in  approximately a quarter there is compression  of the 
spinal cord  warranting  neurosurgical intervention.  Beatrice died,  whilst travelling  in  a car, 
from cord compression  due to undiagnosed FMS.  Earlier diagnosis and advice may 
have prevented her death. 

6 

ACTION  SHOULD BE TAKEN 

In  my opinion action  should  be taken to  prevent future deaths and I believe you 
[AND/OR your organisation] have the power to take such action. 

Nationally approved services,  pathways and guidelines are necessary to prevent 
mortality and  morbidity in these children.  They need early advice,  referral,  screening and 
the correct neurosurgical input. 

7 

YOUR RESPONSE 

You  are under a duty to respond  to this  report within 56 days of the date of this report.  I, 
the coroner,  may extend the period. 

Your response must contain details of action taken or proposed to be taken,  setting out 
the timetable for action.  otherwise you  must explain why no action is  proposed. 

8 

COPIES and PUBLICATION 

I have sent a copy of my report to the Chief Coroner and to the following  Interested 
Persons: 

  (father) 

, 

 acting for Guys and  St Thomas's NHS Trust 

,  Claims and  Inquest Manager,  Chelsea and Westminster Hospital 

NHS Foundation Trust 

I have also sent a copy to : 

,  GOSH legal services 

I am also under a duty to send  the Chief Coroner a copy of your response. 

The Chief Coroner may publish  either or both  in  a complete or redacted  or summary 
form.  He may send a copy of this  report to any person who he believes may find  it useful 
or of interest.  You  may make representations to me,  the coroner,  at the time of your 
response,  about the release or the publication  of your response by the Chief Coroner. 

9 

10th  August 2021 

~ Dr Shirley Radcliffe 

Assistant Coroner Inner West London 

Inner West London  Coroner's Court 
33 Tachbrook Street 
London SW1P 2ED

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