Baby’s End of Life Care Plan
The Applicant Trust sought a declaration from the High Court that it was lawful and in a child’s (C) best interests to discontinue mechanical ventilation. The likely consequence was that it would bring C’s life to an end.
C was born last month and was currently in a Neonatal Intensive Care Unit falling under the aegis of the University Hospitals Bristol and West NHS Trust: University Hospitals Bristol and Weston NHS Foundation Trust v Mr Ozzy Godfrey (1st Respondent) Danny Godfrey (2nd Respondent)(by his litigation friend, the Official Solicitor) [2021] EWHC 163 (Fam) Hayden J
The application was supported by C’s family both on the maternal and paternal side.
The heart-rending circumstances of this case began when the mother (M) gave birth to C at the age of 18 years.
When M became pregnant she told no-one: neither her parents, her boyfriend, nor any healthcare professionals. There was no ante-natal treatment. It was a completely concealed pregnancy.
At some time last month M collapsed for no apparent reason. Paramedics soon discovered that she was pregnant.
The critical care team had no option but to commence CPR and perform a caesarean section. The child’s gestational age was approximately 36 weeks.
C was delivered in a pale, floppy and unresponsive condition. Tragically, M died before she reached hospital.
Throughout his time in the neonatal intensive care unit, C’s presentation was described as highly abnormal. He revealed no heart variability in response to any kind of stimulus. He had no gag reflex.
The lack of recovery of brain electrical activity more than 48 hours after the precipitating event was a strong indicator of a poor prognosis in infants with hypoxic ischaemic encephalopathy (HIE).
MRI findings were as poor as they could be and indicative of a very poor prognosis.
The consultant, Dr A’s, evidence was that clinical signs pointed to further treatment for C having become futile.
He no doubt had in mind the Royal College of Paediatrics and World Health Guidance when he said: “Lack of ability to benefit; the severity of the child’s condition is such that it is difficult or impossible for them to derive benefit from continued life.”
The doctor’s objectives were to try to minimise any pain that C might suffer and preserve his dignity.
Dr A had taken great care to consult with other neonatal experts. All concluded that the prognosis was bleak with a very high likelihood of death, and an inevitability of profound disability to the degree that it would be impossible for him to derive benefit from continued life.
The current clinical plan was to provide ongoing mechanical ventilation, intravenous hydration, treat seizures and prevent any discomfort for C.
There was now a need for privacy and for C’s family to be around him. The hospital had facilitated this.
If C somehow managed to breathe independently following the withdrawal of ventilatory support, milk feeds would then be provided on an ongoing basis accompanied by pain relief. His best interests would continue to be reviewed.
There was no way to predict the outcome. It was, however, clear that C was surrounded by loving family and a highly dedicated team of professionals who would respond to his evolving needs.
Having regard to the legal framework[1] and to the sensitive medical analysis, it was in C’s best interests to make the declarations sought.
Declaration of Paternity and Re-registration of Birth Certificate
The court made a further order in respect of C’s birth certificate following expedited relevant blood tests to establish paternity.
It had not been possible to register F as the father as F and M were not married and M had been unable to signal her consent to F being named on the birth certificate.
Section 14A of the Births and Deaths Registration Act 1953 authorised the Registrar to re-register a birth if he received a declaration of parentage made pursuant to Section 55A or Section 56(4) of the Family Law Act 1986 and it appeared that the birth should be re-registered.
It was also possible to make a declaration of parentage pursuant to Section 55A in respect of a deceased child: Re E (A Child: Burial Arrangements) 2019 EWHC 3639 (Fam).
It was the court’s view, a facet of C’s Article 8 rights, that his birth register should reflect his parentage on both sides if that was at all possible.
Accordingly, the judge permitted, and deemed to have been made, applications pursuant to s58 of the Family Law Act 1996 and section 20 of the Family Law Reform Act 1969.
[1] Aintree University Hospital NHS Trust v James [2013] UKSC 67; Yates and Gard v Great Ormond Street Hospital for Children NHS Foundation Trust [2017] EWCA Civ 410; Kings College Hospital Foundation Trust v Haastrup [2018] EWHC 127 (Fam)