Decision-making when a fetal diagnosis is made

Why is a fetal diagnosis so devastating?

Some people may have been on a long or arduous fertility journey to fall pregnant. Some people may have experienced previous pregnancy losses. Others may have fallen pregnant without significant issue. Most people have been imagining and planning for a future with their baby in it. A bond and a connection to the baby may have already formed regardless of the gestation. Family and older children may have excitedly been anticipating the arrival of their baby.

 

Most parents implicitly imagine their precious baby to be developing in a healthy and typical way. Receiving the news of an anomaly can be shocking, traumatic and unexpected.

 

There can be complex medical information to grapple with that may involve seeing several different specialists. People may have to wait for further tests to reveal further information regarding prognosis. The time waiting between appointments can feel painfully long when all people want is immediate and complete medical information.

Difficult decisions may need to be made, decisions that parents were not otherwise prepared to make. This time may be filled with confusion, fear and dread. Many parents say that the decision-making process was one of the most challenging times for them.

It is normal to wish you were not in this position and to experience periods of overwhelm.  Sometimes, no option feels like a good one. No option feels like the ‘right thing to do’. Prospects for the baby’s future can look unclear or grim. The baby’s condition may be described on a spectrum from  ‘life-limiting’ to ‘it’s unclear what the level of functioning will be’ or ‘the chances of normal development are X percent’.

The thought of continuing with the pregnancy can feel hopeful or terrifying. The thought of terminating the pregnancy can be a relief or can be confronting and overwhelming. People can feel rushed into making a decision for fear that their baby might die or that their baby is continuing to grow. Others may feel pressure to make a decision based on a later gestation and spontaneous labour being imminent.  Fear of guilt and regret can be haunting. It is normal to feel worried about the impact of your decision regardless of your decision to end or to continue with your pregnancy. You may find yourself sitting with many hypothetical scenarios, questions, and ‘what ifs?’

For some people, the decision is clear and clarity around what is best for them and their family becomes apparent early on in the diagnosis journey. For others, longstanding thoughts about termination, disability, parenthood and life, can be thrown into question and the decision can take longer.

 

Everyone is different. Everyone processes information in their unique way and in their own time.

 

Deciding what to do – the decision

After considering the potential consequences of the diagnosis (many of which may be unknown), some parents may proceed with the pregnancy. Some parents may end their pregnancy.

 

Deciding to end the pregnancy

Some parents see ending their pregnancy as a way of saving their baby from the pain of surgeries or from a compromised future life. Ending a pregnancy can be an act made from love, as parents choose to protect their child from an uncertain, compromised, or challenging future. Some parents decide that they would not cope well with raising a child with disabilities or medical conditions, and/or they determine that the impact on other siblings would be too much. The decision to end the pregnancy can range from being clear and relatively straightforward (not without grief), to being agonising and tumultuous.

 

Even if the decision feels clear and final, it does not mean that the baby is any less loved or wanted than those who grapple further with this decision or chose to continue their pregnancies.

 

Deciding to continue with the pregnancy

Some parents see continuing a pregnancy as a way of committing to their baby through whatever is to come. Continuing a pregnancy can be an act made from love, as parents choose to adapt to the uncertainty and difficulties that may arise in parenting their baby, choosing to protect their baby’s existence. For some parents, they choose to continue their pregnancy as they feel they cannot bring themselves to terminate. Some parents have complicated thoughts – hoping for a miscarriage while also loving their baby.  The decision to continue the pregnancy can also range from being clear and relatively straight-forward, through to being agonising and tumultuous.

 

Struggling with the decision does not mean that a baby is any less loved than those who feel clear and final about the decision to continue the pregnancy.  

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.

When the decision has been made

Ending a pregnancy

Parents end their pregnancies for many different diagnosed conditions and prognoses. We understand that the journey to arrive at this decision can be complex and may be associated with much stress, anxiety and grief. We also recognise that everyone is different and that people need to decide for themselves what suits their individual circumstances and capacities and their particular families. Some parents create memories from the time spent with their baby during pregnancy.

 

Arriving at the decision to end your pregnancy can be agonising. It may be helpful to remind yourself that the decision to end a pregnancy is made from love and compassion for your baby.

 

Continuing with a pregnancy when a condition has been diagnosed

Some parents choose to continue with their pregnancy, knowing that there will be implications of the diagnosis for the child and for their future lives. Although they may not know the extent of these implications, there are many reasons why some people choose to continue. For example, termination does not fit with their cultural/religious beliefs; they embrace disability; they have good support; they are willing to accommodate career and other life goals to care for the baby/child; the bond it too strong; they determine that they could never reconcile their guilt if they ended the pregnancy. Irrespective of how and why parents come to the decision to continue, there may be grief and loss associated with their baby’s condition. They may also wish to engage in support groups or community groups that have relevance to their child’s difference or condition.

 

Arriving at a decision to continue with your pregnancy can feel like the right thing to do, and can feel frightening all at the same time. Reach out for support.

 

Continuing with the pregnancy when the baby is going to die

For parents who have been told that their baby will not survive, some people choose to ‘let nature take its course’. Although they are aware that their baby will die, they choose to continue with the pregnancy until this occurs naturally. Parents can be supported through perinatal palliative care programs. Some parents choose to make memories with their baby for the time they have together.

 

Support after the decision has been made

People may experience many mixed emotions through the decision-making process as well as after their decision. Some people may turn to informal supports such as trusted family or friends. Other people may need the support of a counsellor.

 

You are not alone.