High Court sides with NHS as parents fight for their four-year-old to remain on life support in hospital

The High Court has ruled that the NHS should cease life support measures for a four-year-old boy with disabilities, despite the child’s parents fighting to keep their son on ventilation. The judge said it was with ‘great sadness’ that he granted the trust’s application to end life support after one year of treatment. 

The family court heard how the four-year-old suffered two cardiac arrests in autumn last year, and while he had ‘periods of stability’, medics had decided it would be in his best interests if ‘invasive’ ventilation was stopped. A Paediatric Palliative Medicine Consultant, has advised that a redirection of care is appropriate for the child and is in his best interests. The four-year-old is currently in a ‘stable’ condition but the ‘opportunity to be transferred home or to a hospice to end his life in the care of his parents may be lost at any time’. The NHS claim that the young boy’s condition is at risk of becoming more ‘challenging’. A Matron also said the ‘conditions and treatment outweigh the benefits to him from life-sustaining treatment’.

Prolonged ventilation has caused damage to the four-year-old’s lungs and reduced respiratory function. His caregivers say that his condition has ‘deteriorated’ in the last six months and that life sustaining treatment will ‘not bring about any improvement.’ Alongside two cardiac arrests the child has suffered a number of episodes of severe sepsis with septic shock.

His parents have challenged the application, stating that they felt a ‘loss of control’ of the process. The judge agreed, saying ‘Decisions about life sustaining treatment are usually between clinicians and parents, not in courtrooms’. At the outset of the hearing the parents’ made an application for an adjournment. They wished to have time to explore the possibility of their child being
transferred to a hospital abroad for treatment. However the application was late.

A guardian for the child agreed with the NHS in this case, however his parents did not. They admitted they had agonised ‘daily’ over their decision to keep their young son on life support. The judge spoke of the parents ‘powerful’ testimony about their choice to proceed with the pregnancy, despite several congenital defects that would limit their son’s quality of life. The couple stated that they ‘didn’t consider termination once’.

The court heard how: 

“They[his parents] thought then, and think now, that their child is a gift from God. He has enhanced their lives. His life is meaningful and has given meaning to the lives of others, including them. They know that as parents of a severely disabled child they cannot give him the range of experiences that they could give a child without his disabilities, but they can give him unconditional love and the knowledge that they are always there for him. They regard it as wholly unethical to bring about his death by choice.”

Earlier this year, the boy’s mother is quoted as saying: 

“We absolutely know – because we see and feel it – that he knows us and knows he is loved.”

The judge acknowledged the ‘devotion and love’ of the young boy’s parents and his presence within the community, saying he had ‘lived a full life’ given the circumstances. The child’s guardian made observations on the child’s condition and concluded that there ‘was no certainty’ he was aware of his surroundings.

The case concluded with the judge saying: 

“The parents dignified manner, devotion to their son, and strong faith have made a deep impression on all those involved in their son’s care, and on the court. The decision I have made is contrary to their profound beliefs and wishes but I hope that at some point they can find some peace knowing that that they did everything they could to support love and cherish their son.”


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