Lexie Louise Harrison · Prevention of Future Deaths report

On 2nd July 2013 I commenced an investigation into the death of Lexie Louise Harrison, aged 2½ years. The investigation concluded at the end of the inquest on 26th January 2015. The conclusion of the inquest was a Narrative Conclusion (annexed hereto) and the medical cause of death was:-

1(a) Liver failure
1(b) Infantile Refsum Disease

In 2011 Lexie Louise Harrison (“Lexie”) was diagnosed as suffering from Infantile Refsum Disease. In or around March 2013 Lexie was placed on a programme for the banding of oesophageal varices, which procedure is performed endoscopically under general anaesthetic. On the 30th May 2013 Lexie underwent such a procedure at Sheffield Children’s Hospital. The Consultant performing the procedure on that occasion attempted to band a varix but was unsuccessful in so doing. The size of the said varix was such that it was too small to be banded. The aforesaid procedure caused trauma to the varix and extensive bleeding therefrom, which bleeding gave rise to the decompensation of Lexie’s liver. Lexie’s
condition continued to deteriorate. At 10:30 am on the 18th June 2013 Lexie died at her home address.

(1) Birmingham Children’s Hospital NHS Foundation Trust has a policy in place and/or guidelines dealing with paediatric endoscopy procedures for the banding of an oesophageal varix/oesophageal varices (“the procedure”). Neither Sheffield Children’s NHS Foundation Trust nor Leeds Teaching Hospitals NHS Trust has such a policy and/or guidelines. Both of the latter Trusts have undertaken the said procedure for many years.
(2) There is no standardisation of practises (either locally or nationally) adopted by Consultants when undertaking the said procedure, by reason predominantly of there being no national policy and/or guidelines in relation thereto. Such a national policy and/or guidelines should address the following:-
(a) Precise definitions of the grades of oesophageal varices;
(b) Which grades of varices should be subject to banding and which should not;
(c) Those patients who are to be deemed suitable for placing on a banding programme and those who are not;
(d) Once a patient is placed on a banding programme, the assessment process to be adopted prior to the said patient undergoing each procedure;
(e) Post endoscopy care, for example, the administration of sucralfate, frequency of basic observations;
(f) The steps to be taken to properly assess for and manage variceal bleeding, for example, the immediate use of antibiotics;
(g) The circumstances in which a Consultant is deemed to be competent to undertake the procedure alone or with supervision.