FD25P00441 - [2025] EWHC 2100 (Fam)

Z has severe neurological dysfunction due to the global malformation of his brain that he has had from before birth, from which he will never recover. Since his birth he has had numerous other medical complications, including two hypoxic episodes in which he has suffered further brain injuries.

Following his birth, due to fluid collection on the brain he required a VP shunt to be inserted for his hydrocephalus. This procedure took place nine days after his birth and it has subsequently had to be replaced with a ventriculoatrial (VA) shunt.

Z was discharged home when he was three months old but had to be re-admitted to the Paediatric Critical Care Unit (PCCU) nine days later due to respiratory deterioration which, despite intensive care treatment, led to a cardiac arrest two days later. Z had to be mechanically ventilated for thirteen days.

Z suffered a second respiratory and cardiac arrest when he was six months old and was actively resuscitated for twenty-one minutes. Z needed three intraosseous cannulas and two doses of adrenaline.

When Z was seven months old he was diagnosed with necrotising enterocolitis (NEC). Initially it was treated with antibiotics, but Z deteriorated and two weeks later he was transferred to another specialist hospital where Z underwent a laparotomy during which 35 cm of diseased and perforated, distal ileum was resected, an ileostomy was formed and the VP shunt was exteriorised (and subsequently replaced by a VA shunt) before being transferred back to the Trust’s hospital.

Z remains intubated and ventilated via an endotracheal tube in the PCCU. He requires twenty-four hour support with his breathing and nursing care.

Whilst there have been previous discussions with Z’s parents regarding a trial extubation, no agreement was reached. The medical team now considers such a trial is not in Z’s best interests. This is because if Z is extubated and needs reintubation the clinical team feel it would not be in his best interests to reintubate.

There have also been problems with various tubes and lines that have had to be inserted into Z to provide nutrition and medication. Z has had to have these lines and tubes replaced or re-sited. Due to the difficulties this has sometimes had to be done under general anaesthetic or by interventional radiology. Currently Z has a single-lumen tunnelled line. It was not possible to place a multiple lumen line which means that all of Z’s infusions go through this single lumen. This increases the risk of future line infections and complications. Infections have been managed by antibiotics. It has been difficult to insert new lines and the procedures for doing so can be very invasive for Z. For example, Z previously had a ‘Hickman’ line which was noted to be leaking and non-functional. It was removed and a central venous catheter was inserted. That started to leak and become poorly functional after only a short period and the tunnelled line had to be inserted.

About two weeks ago, Z was diagnosed as having a left common femoral vein thrombosis/clot. Anticoagulation therapy was commenced, which requires regular blood tests. Recently it took ten attempts at blood sampling to get the required sample with Z’s dystonia observed to worsen during this time.

Z continues to exhibit significant dystonia and myoclonic movements, with only relatively brief and unpredictable periods of respite. Despite the medical team’s best efforts it has not been possible to find a combination of medication to effectively manage these symptoms.

Z receives all his nutrition via TPN and intermittently via either a Naso-Jejunal (NJ) or Naso-Gastric (NG) tube, but is still failing to thrive. There remain significant concerns about Z’s gut absorption and a very cautious approach is being taken due to the impact on Z of taking nutrition, however it is administered. Just before the hearing it was stopped via the NJ tube, and even more recently Z was unable to tolerate NG feeds, so that was stopped too. The consequences of this reduced nutrition not only impacts on Z’s ability to grow but also on the ability for any wounds to heal.

Prior to issuing these proceedings on 22 July 2025, the Trust sought second opinions from specialist Consultants from other Trusts. Dr C, Consultant in Paediatric Intensive Care, Dr D, Consultant in Paediatric Neurology and Complex Motor Disorders, Mr E, Consultant Paediatric Surgeon and Dr F, Consultant Paediatric Gastroenterologist. Each of those consultants, save for Mr E, had visited and seen Z, reviewed the relevant records and had detailed discussion with the parents before providing their reports. Each of these second opinions supported the conclusions reached by the Trust.

There have been several discussions with the parents regarding Z’s condition with regular weekly meetings to provide clinical updates which provide the parents with an opportunity to ask questions. Following these discussions with the parents, it became apparent to the Trust that a consensus was not going to be reached and this application was made. Directions were made by Poole J on 23 July 2025 and this hearing listed.

The Children’s Guardian visited Z two days prior to this hearing. She stayed for over an hour observing Z, speaking to the parents and the clinical team and provided a detailed note of the visit.