In November 2020 Kirsty Ormston started in post as music therapist at the Neonatal Intensive Care Unit (NICU) at London’s University College Hospital. The pilot year of this role was funded by Jessie’s Fund. An article describing the work and containing a poignant case study was published recently in the Journal of Neonatal Nursing. What follows contains excerpts from this article, with thanks to the Journal and to the authors, Kirsty Ormston, Esther Rose, and Katie Gallagher.
‘George was born at full term with presentation of Respiratory Distress Syndrome, suspected sepsis and signs of Persistent Pulmonary Hypertension…. At 35 days of life, and an awareness of George having a terminal illness, a care plan was made for redirection of care. Organ donation, hospice services, post mortem and symptom management were all discussed with parents.’
George was referred to Music Therapy by the unit Physiotherapist, since ‘Music Therapy provides opportunity for the infant to be seen as a whole rather than seen for the individual areas of fragility, and has the potential to create moments that can be treasured after they have died.’
‘The Music Therapist observed both George and his vital signs whilst his mother leaned close to George to sing to him, accompanied quietly by the therapist. On singing to George, autonomic changes including increased oxygen saturation and increased pink colouring were observed and highlighted to his mother to illustrate George’s recognition and enjoyment of mother’s voice. George’s Mother was able to see the effect of her voice on baby and in the following session was encouraged to continue to sing, repeating her chosen lullaby whilst looking out for changes in George’s face and pausing to reflect his reactions.’
When George was four months old and had not responded positively to treatment, his parents expressed the wish to have him transferred to home to end his life.
‘George’s parents wished for George to experience the garden at the family home. They also requested that the Music Therapist who had been on the unit and available through the local hospice to play George’s ‘Paint It, Black’ lullaby during extubation. It was felt by parents that music had been something that had previously relaxed George, and reminded them of happier times, so would support the best possible end-of-life care for George.’
After George had died his parents wrote ‘Kirsty joined us on the day of Georgie’s compassionate extubation at home and it was very comforting to know that he was surrounded by familiar pleasant sounds associated with happy and calm times we had together. For one last time we were able to experience being a family of three. Later I asked Kirsty if she could make a recording of some of the music she played for him – she very kindly sent us the recording. We don’t always have the strength to think of his last day, but when we really want to go back to that day, listening to the recording really helps. It also helps us think of all the wonderful times we had with our little boy.’