Ethan's Story

"Without them, I would never have been able to make an effective challenge to the assessment and Ethan would still be in hospital."

When she was 31 weeks’ pregnant, Louisa discovered that her unborn son had a tumour the size of a grapefruit in his mouth.  An operation to give Ethan a tracheostomy when he was born to ensure he could breathe involved 40 medical staff and began while he was still attached to the umbilical cord.  He was in intensive care for three months and then underwent a series of operations to remove the tumour in small sections.

Louisa was separated from Ethan’s father and needed all the support she could get to be able to bring Ethan back home safely from the hospital.  However, the Clinical Commissioning Group (CCG), which made an initial assessment about the level of care Ethan needed, offered her only five nights of support per week.  Louisa suffers from a condition similar to narcolepsy, where she struggles to keep awake for long periods of time, and she knew that she could not manage to look after Ethan for 48 hours on her own without sufficient sleep.   Bringing him home under these conditions would have meant putting him at risk.  Ethan therefore remained in the hospital while Louisa visited him regularly, worked to support them both and did everything she could to persuade the CCG to change its mind, without success.  Furthermore, she was warned that if she did not accept the CCG offer, she ran the risk of Ethan being taken into care.  Louisa could not afford to pay for a lawyer but luckily managed to find LawWorks through the charity Together for Short Lives, and was given the support of two volunteer lawyers to help her challenge the decision made by the CCG.

Ethan had been due to have the final operation to remove the last section of the tumour, but the start of the pandemic delayed the operation and he then contracted Covid-19.   However, with the help of the LawWorks volunteer solicitors and her social worker, as well as an intervention from her MP, Louisa was able to make the case to the CCG for Ethan to have the seven nights of care that he needed. She was finally able to bring him home when he was 20 months old.  Ethan cannot yet speak because of his tracheostomy, but once the tube is removed when he is a little bigger, with the right support he will be able to finally learn to talk.

Louisa still has ongoing issues that she needs to resolve in relation to Ethan’s nursery education but believes that she can address these with additional support from LawWorks.   She is extremely grateful to the volunteer lawyers who helped her get to the stage where she could safely bring Ethan home from hospital.  She says, “Without them, I would never have been able make an effective challenge to the assessment and Ethan would still be in hospital.   I am sure that having the legal oversight in the case prompted some movement in the CCG’s position.  The lawyers helped to move the case along in a non-combative and collaborative way in order to achieve the result that we wanted.”