Many tools have been developed to assess health related quality of life (HRQoL). The interest in these tools relates to their ability to measure the evolving perception of HRQoL throughout the growth of the child as it evolves in its family. For ex premature babies, the wide body of literature tells us that HRQoL can be relatively low in early life. This is especially true for parents submerged by the burden of care, numerous hospital appointments, and possibly low maternal mood [2]. However, their HRQoL improves gradually during infancy and even more during adolescence and young adulthood. Ultimately, there seems to remain very little difference in HRQoL between ex-VLBW and control groups at a later age [3]. It seems obvious that most physical disabilities have been dealt with, allowing more emphasis on the social and psychological aspects in the self-assessment of Quality of Life [4]. From most of these studies, it is clear is that having a biological impairment does not automatically translate into a poor self-assessed quality of life.

One of the main problems in assessing babies’ quality of life is that parents and health professionals are the key reporters of the health status of children, not the children themselves. Studies show that proxy respondents tend to report higher morbidity and lower quality of life than the individuals whose perceived health status and quality of life is being judged. In perinatology, one of the first studies in this area was conducted by Saigal et al. [5], who compared perceptions of health practitioners and parents of very low birth weight children who were adolescents at that time. Clinicians systematically rated four vignettes about disabled adolescents lower than parents did, especially when the vignettes presented a severe mental or physical disability. One case was even perceived by clinicians as being worse than death. However, there was much more concordance in perceptions of the four vignettes between adolescents and their parents. In general, agreement between parent and child may vary depending on the domains that are being measured. For example, there is good agreement between parent and child about observable areas, such as physical activity and functioning, somatic distress, and chronic illness. Agreement is poorer for domains such as social and emotional functioning, pain, and cognitive functioning. Ironically, it is not possible to obtain the personal perspectives where these are most needed: from those who are too young, sick, disabled, or cognitively impaired to respond themselves. Under these circumstances, we have no other choice than to rely on proxy evaluations.

Another important limitation in the evaluation of the quality of life of babies in the neonatal intensive care unit lies in the fact that we are not really measuring it. In fact, we are predicting future quality of life, sometimes to make life and death decisions. Most of the time, we are not even completely certain that the child will present with a physical or intellectual disability, or of the degree of such impairment. Furthermore, such a prediction doesn’t take into account many factors, such as the child’s resilience and the parents capacity to adapt to potential challenges. Resilience is an individual’s ability to cope with difficulties, in this case, to overcome physical disabilities and develop social and relational skills. For small children who will be dependent on their parents for a long time, one might also talk about family resilience, although this is rarely mentioned in the medical literature. Adaptation to disability related to perinatal problems has been well demonstrated. In particular, social and psychological factors are considered to be more important than physical impairment in the self-assessed quality of life of teenagers and young adults.