Some concerns about the mental health of disabled babies and their mothers. Are we helping or hindering? By Peter Limbrick

My concerns are based more in a degree of familiarity with families of babies and infants who have disabilities than in any expertise in psychiatry. My experience is that when a new baby arrives with disabilities, little attention is paid to the mental health of baby, mother and other close family members. I also believe that common practice in early childhood intervention risks endangering the mental health of baby and mother. I am writing from the UK but I suspect these might be international issues. I will list my concerns so that you can measure them against your own knowledge, experience and practice – whether you are a practitioner or a parent.

The new mother, father and other close family members might be overwhelmed with negative emotions, including grief for the non-arriving perfect baby, anxiety about the baby’s survival and, very often, guilt about what has happened. It is unlikely there will be the proper celebrations of a birth that traditionally would put mother and baby together at the beginning of a new exciting story.

The mother-child relationship and the mental well-being that grows from it might be more difficult to achieve and even impeded by our interventions during the first minutes, hours, days, weeks and months. There might be immediate separation after the birth; the baby might be out of reach for effective mothering; the baby’s condition might make holding, cuddling and feeding difficult, unsatisfying and stressful for mother and baby; the mother’s expected growing competence and confidence might give way to helplessness and hopelessness in the face of anxiety, fear and deep feelings of failure – and with so many doctors, nurses and therapists knowing so much more about her baby than she does.

This scene is set in the delivery ward and then perhaps the neonatal intensive care unit – both domains well outside my area of deep knowledge.  I appreciate that survival might have to be the immediate priority, but I wonder how practice might change if the mother-child relationship and the mental health of both were always a significant part of the decisions about how to provide medical interventions.

One possible change could be to give the mother and family their own special nurse to help them make sense of all that is happening and to help them build a whole coherent picture about the baby’s condition, treatment and prognosis. This is important when the baby has a multifaceted condition that requires the involvement of a variety of consultants, nurses and other specialists – perhaps from more than one hospital. This would surely be, in part, an antidote to the mystery, uncertainty, confusion and contradictions that commonly arise leaving the family frightened and bewildered.

I do have experience of support systems once a baby is home from hospital and requiring support from practitioners in the community. Perhaps you have similar experience to mine of babies in the first weeks and months having assessments, tests, clinics, home visits, treatments, therapies, reviews and case conferences regularly involving twenty, thirty or forty practitioners. This is a massive disruption of the time the mother could otherwise spend getting to know her baby, learning how to be with her baby, developing mothering skills and maternal love. For the baby, this imposed routine of interventions can make life a miserable affair, with little time to do what babies need to do – being nursed, sleeping, playing baby games on mother’s knee and developing a sense of comfort, well-being, feeling wanted and being loved.

Also, the common practice of giving parents home programmes to help their baby’s development can be counterproductive; asking parents to become therapists, diverting family time into treatment time and often adding to a mother’s stress and sense of failure – and guilt again. Home programmes can work well but they should always be carefully negotiated with parents and with careful thought about the emotional state of mother and baby at the time.

In consideration of the difficult time spent in hospital and of the need to protect and nurture the mother-child relationship, some families would benefit from a significant reduction in the number of practitioners, procedures and programmes that descend on them in these first weeks and months. Within the constraints of the baby’s health needs, let the mother-child relationship be paramount. Let the first ‘Team Around the Child’ be just three people – mother, baby and one trusted and familiar practitioner – all enjoying being together, learning from each other and gradually replacing negative emotions and thoughts with positive ones. This special practitioner will have time to listen as the mother adjusts to this new and unexpected situation in her life. As far as possible, she will be an intermediary for the essential interventions of others and will help the mother decide when she and the baby are emotionally, psychologically and socially ready for the team to grow to four, five and so on.

This special practitioner will be a key part of an intelligent effort to find a working and evolving balance between the common practices in early childhood intervention for disabled babies and the mental health needs of mother and baby.

In conclusion, given that we all have different areas of knowledge, experience and expertise, I want to advocate for a much busier bridge linking practitioners in the world of early childhood intervention with those in the world of mental health.

 

Please get in touch if you have thoughts on this, relevant research or examples of good practice in any country. I will be happy to use the TAC Bulletin to spread the word. Comments from parents would be very welcome. (Your name will not be used unless you want it to be.)

Peter Limbrick. March, 2016.

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