The journey home from hospital for infants born with myotubular and centronuclear myopathy can be complex, with many community services needing to be coordinated for a safe transition home.
This short film provides personal stories from three families, including the parents of Baby Elijah who has myotubular myopathy. They each share their experiences about how their Long Term Ventilation team helped them to be able to get their baby home from hospital safely, smoothly and within a matter of months.
Long Term Ventilation Roadmap
The Long Term (Chronic) Ventilation Roadmap, is a useful reference tool to help parents of children who are long-term ventilated in their transition from hospital to home. You can find the roadmap within this publication, and how A Standardized Discharge Process Decreases Length of Stay for Ventilator-Dependent Children Baker et al (2015)
Meet others and learn from ‘real life’ experiences in this active and friendly group
MYOTUBULAR MYOPATHY Facebook Group is a private social media support group for anyone affected by myotubular and centronuclear myopathy.
More resources to help
You can also read about other personal experiences and expert professional advice in other Factsheets as well as latest care standards in our Journal Publications pages.
Below and for easy reference, we’ve extracted two ‘standards of care’ publications on managing the conditions.
Feel free to download and share the first with your child’s hospital team; the second is a more patient-friendly version of it written by a collaborative group of parents of children with myotubular, centronuclear and other congenital myopathies.
Standards of care for congenital myopathy A publication for healthcare practitioners by an international collaboration of researchers sharing best practice on standards of care in congenital myopathy (2012. Updated 2018).
The Care of Congenital Myopathies – a Guide for Families A patient friendly version of the ‘Standards of care for congenital myopathy’, this guide covers all aspects of living with a congenital (born with) myopathy, but also includes information about nutrition, exercise, transition to adulthood, amongst other topics. It has been written by an international group of parents and researchers, including some parents of children with myotubular and centronuclear myopathies. (Updated 2021). This guide is available in English and other languages.
