Deciding what to do – the process
People may feel like they are in a ‘fog’. This may make information processing and decision making more challenging. It is important that people take the time to ask questions and process their decision carefully. Writing down information – appointments, the details of professionals you may be meeting with, and any questions you have – can be a helpful method of keeping track of all information shared with you. Parents may be undecided about what to do – going back and forth on their decision. There may be differences in how each person in a couple see the situation. This is not unusual.
Counselling can be helpful at this time, providing an unbiased forum in which to process the information you have been given and the decision that best suits you and your family.
How can counselling help?
Counselling with a therapist is different to “prenatal counselling”. Prenatal counselling is typically about giving mothers, fathers and other parents information about the diagnosed difference or condition. Counselling, in a therapeutic sense, is not about the diagnosed condition, but rather a way to explore how parents think and feel about their circumstances.
A therapist who is trained in non-directive counselling can help expectant parents to explore their thoughts, feelings and meaning around whether to continue or whether to end their pregnancy. Consulting with a therapist at this time can carry parents into the future with a knowing that they weighed up all the information they had at the time, and gave their decision due consideration.
Your therapist may help you to explore and process the following:
The quality of the baby’s life
Some people have a relatively clear idea of the extent of the potential impact of the diagnosis on their baby. Other people are left wondering based on statistical probabilities. People process this kind of information differently. For some people, the diagnosed condition seems too life-limiting for their child. Others decide that their child could still experience a good quality of life. Quality of life can mean different things to different people and is separate to the length of life. The quality of a baby’s life based on the medical information at hand, is for the individual/couple to interpret in their unique family context.
Culture and religious beliefs
Some people make decisions in accordance with their cultural and religious beliefs and some people go against their cultural and religious beliefs. Some people benefit from consulting with their religious leader as part of the processing of their decision. Some people turn to prayer to seek answers, strength and guidance.
Values for self, relationship and family
The therapist might help parents to articulate their values, goals and aspirations for themselves as individuals, their relationship and their family. What values might be compromised (e.g. personal, career, family goals, financial goals, educational goals, travel, etc.) if they end the pregnancy or if they continue? And what values may be upheld? People’s values, relationships and families differ. There is no right or wrong.
Coping capacities and mental health
It is important for parents to weigh up their personal capacities to cope. Some people feel they have the capacity to cope with the life demands of a child with disabilities or medical needs, and others do not. Some people may feel that they are at capacity in managing their current mental health and decide that additional demands could exceed their coping capacities and overall well-being. On the other hand, some people believe that terminating their pregnancy would result in more of a threat to their ongoing mental health. Everyone’s situation and personal resources are unique and people make decisions in different ways.
Access to support
Parents may need to look realistically at the support available to them over the long term. What physical, emotional and financial support do they have or do they need? Is the accessible support enough to cope with the demands that might be placed on their family? Their list of supports may grow over time. People’s support systems differ and access to support may be a significant consideration.
Impact on other children (short and long term)
For some parents who have older children, weighing up their current children’s needs, and determining the impact of a sibling with disabilities or health needs on their existing children, can also help to guide their decision. Some people see the impact as being negative and too compromising of their current children’s lives. Other people see that the inclusion of a disabled child in their family as a welcomed addition. Either way, all children with or without a sibling living with a disability can learn values of compassion and acceptance of all abilities. Everyone is different. What one person might see as a positive, another person might see as a negative. No judgement.
Implications for ongoing stress on life
Raising a child with special needs can be stressful. This doesn’t mean that it is not rewarding.
Terminating a pregnancy is difficult. This doesn’t mean that it is the wrong thing to do. Everyone is different, and everyone makes decisions that are relevant to their unique circumstances.
Only you truly know what is the most appropriate course of action for you and your family. Nobody else can make this decision for you.
Long term care of the child (after parents have gone)
One of the most confronting aspects for parents considering whether they have the capacity to raise a child with special needs, is the question of what happens to the adult child when the parents are gone. Parents may be concerned about the implications of this on other children. The fear of not being around to care for their grown child can be immense and can weigh heavily on parents’ minds.
How expectant parents reconcile their decision
The process of deciding the most appropriate course of action involves weighing up at what cost one continues with the pregnancy, and at what cost one ends it. Decisions may be based around the anticipated impact on the baby, on the parents, on other children/family members, and on the parents’ relationship. The well-being of the family as a whole is an important consideration, as is the well-being of the couple relationship and the mental health of each individual.