Table 1 Most stressful memories and flash forwards related to the IEM of their child
Case 1 (father) | Case 2 (mother) |
|---|---|
Stressful memories | |
Comforted the child in the hospital, saying that everything would be okay after a minor ENT operation (grommets). Now the diagnosis MPS III is known, it became clear that ‘everything would not be okay at all’ (failure as parent, SUD 7) | The pediatrician communicated the diagnosis MPS III to the parents (SUD 9) |
The pediatrician communicated the diagnosis MPS III to the parents (SUD 6) | Termination of a subsequent pregnancy because the fetus was diagnosed with MPS III (SUD 8) |
Announcement from the hospital that the clinical trial (enzyme replacement therapy [30]), in which the child participated, was prematurely terminated (loss of hope, SUD 7) | |
Attending the funeral of another MPS III patient (SUD 6) | |
Flash forwards | |
Funeral of their child with MPS III (SUD 9) | Her child in a vegetative state with palliative care by deep sedation and withholding of fluids (SUD 10) |
Image of the child in a special disability-inclusive transport necessitating a lot of medical equipment (tubes) and making repetitive movements and screaming sounds (SUD 8) | Her child in a wheelchair, no longer able to communicate by laughing, eye contact or movements (SUD 8) |
Sudden death of the child (SUD 7) | |