NICU graduation to PICU

There is a relatively small but potentially growing number of very preterm children who receive ongoing intensive care and transition from neonatal to PICU services.

Many of these children died before their second birthday, and results suggest that many have long-term health conditions, as shown by those children with long stays in PICU and tracheostomy ventilation.

To improve the care and experiences of children and their families, the results of this study suggest that transitioning infants may benefit from the early involvement of multidisciplinary teams, including medical complexity teams and parallel planning, considering the potential benefit of palliative care input where the outcome for children is uncertain.

Where do we go from here?

British Association of Perinatal Medicine has formed a working group to help transition care from neonates to paediatrics.

The Paediatric Critical Care Society (PCCS) has formed a Special Interest Group (SIG) on children with complex critical illness which will encompass a small (but growing) portion of the children who transition from NICU to PICU.

In addition to the PCCS SIG, a new national parental advisory group has been established for children with complex critical illnesses. Incorporating the family’s perspective is essential to ensuring that everything we do as professionals is guided by their voice.

There is no current unifying definitional term for ‘long-term health conditions,’ ‘children with medical complexity,’ or ‘multi-morbidity’ in children. Therefore, when children with multiple long-term illnesses receive care, it is recorded under each individual ailment without a comprehensive definition across various healthcare settings (such as community services, primary care, or hospitals).

The Roald Dahl Charity is currently working to establish a definition for children with medical complexity (CMC). Additionally, one of the authors is embarking on a pragmatic sub-definition creation for children with complex critical illnesses in critical care settings. This involves collaboration with the national parental advisory group and a team of experts. This sub-definition aims to identify the subset of CMC patients who require more intensive care, specifically at the level of PICU or HDU.

PICANet is expanding its scope to include long-term ventilation and high-dependency care. This enhancement will provide a more comprehensive understanding of the current care and management practices of medically complex children.

While considerable progress is being made to refine definitions and improve understanding of hospital-based care, addressing other aspects of healthcare is equally vital. Many families must navigate a complex system, moving between primary care, emergency departments, and multiple specialist appointments. They may also encounter varying levels of support in areas such as education, respite care, and hospices. These challenges highlight opportunities to use data to create a more unified and seamless pathway of care.

Together, we hope this can evolve and aid in the development of policy, pathways, and guidance within the NICU, PICU, and beyond to care for and champion this group of children to the best of our abilities. 

And finally, a special note from the parent and author Suzy Newman

Parents are the constant in their child’s life and their expertise comes from their hours by the bedside, they may not know the medical terminology but will be able to tell if something is different or not right.

Listening to parents may help them to deal with the enormity of what they are going through and give them back some hope and purpose. Even in the darkest days the feeling of helplessness can be made better by being your child’s voice and their constant. 

What I realise now is that I was the expert on my child and telling specialists when you think things aren’t right might just help them to give your child the best possible care they deserve. After all, we are all part of a team that is ultimately working towards the same goal.

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