Abstract
Background: Hemifacial microsomia is a rare genetic disease, that is present only in a few cases in Hungary. The condition of microtia (small and dysfunctional external ear) is accompanied by underdeveloped mandible, which causes facial asymmetry. There is currently no coordinated early care available for children with this condition in Hungary. We present the successful efforts of a mother who organised a healthcare team to improve the functioning of her child. We also outline the results of a multidisciplinary team meeting to define the prerequisites of making aesthetic microtia surgery available for all children who need it in Hungary.
Approach: A multidisciplinary team-meeting was organised by the Authors with the objective of facilitating expert discussion on the possibility of introducing microtia surgery with 3D-printed ear implants in Hungary. The aim is to make this procedure available for all children who require ear reconstruction. The team comprised all healthcare professionals who had been involved in the young child's treatment, as well as representatives from the regulatory and biomedical engineering fields.
Results: This was the first multidisciplinary team-meeting in Hungary which integrated the knowledge and expertise of a wide range of healthcare professionals to facilitate the introduction of a new surgical method initiated by a lay person (mother) with the aim to make good for the society not just for the individual. The potential challenges and opportunities were identified, and the contribution of civil society organisations was clarified.
Implications: By working in collaboration with the patient and their relatives, we can improve the quality of care provided and ensure that social support and perseverance are as effective as possible. Caregivers who are internally motivated may be able to improve the care of patients with rare diseases by sharing their personal experiences with professionals. Aiming for collective health improvement, rather than merely focusing on the individual, can foster greater collaboration.