Alice Pettersson

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 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. 6

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.