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Antenatal counselling families whose fetus has a neurological anomaly: one parent’s reflections

2021; Wiley; Volume: 64; Issue: 1 Linguagem: Inglês

10.1111/dmcn.15087

1469-8749

R. Turner,

Spinal Dysraphism and Malformations

EDITOR–In 2015 my husband and I found we were expecting twins. Though delighted, the twins would give us four under-5-year-olds, so we were already daunted by what lay ahead when a fetal anomaly was detected at the 20-week scan. We were told that ‘Fetus B’ had an interhemispheric cyst. A magnetic resonance imaging scan was performed a week later confirming the cyst and showing that our infant had agenesis of corpus callosum (ACC). This information, given to us by the radiologist, was immediately followed by a meeting with the obstetrics consultant. These conversations were brief, and though many questions were left unanswered, we were told that there was a possibility of stillbirth and that we might consider a selective termination. Three weeks later we were able to meet with a paediatric neurologist and a paediatric neurosurgeon. We were given a detailed prognosis for our infant: the best- and worst-case scenarios were outlined and given, using positive and negative framing of the data. We were able to understand both the wide range of possible outcomes and their likelihood of occurrence. We were told that a stillbirth was, in fact, unlikely and that around three quarters of children with isolated ACC had an outcome in the normal range.1 Furthermore, we were helped to consider what life might look like with a child with additional needs; what impact it might have on our family; and how the child themselves might experience life. I whole-heartedly support the recommendations set out by Hart et al.2, 1 and would like to offer these comments. First, a team of professionals collaborating to provide information and advice avoids the situation where parents might receive conflicting information from different professionals. Many parents will be unaware of the limitations of any one specialism, and therefore not know whose opinion may be more expert or to whom questions should be directed. A team can speak as a unified voice, even if they are presenting a range of outcomes or plans. Second, the prospective parents should have a clear and detailed prognosis before they are asked to consider how to proceed. Had we been in a position where we would have considered a termination, the 3 weeks between the two consultations may have significantly affected our decision. A discussion of how to proceed before the parents have a thorough understanding of the prognosis is premature. Third, parents need time. As Hart et al. suggest,2 parents will be experiencing a wide range of overwhelming emotions. Time to process the information, discuss with their support network, do their own research, or talk to parents of children with the same diagnosis is essential. For us, written notes summarizing discussions and information enabled us to revisit what we had been told. We regularly left meetings only to think of questions we should have asked. Facilitating opportunities for prospective parents to come back with further questions allows them to give deep consideration to the choices that they are making. At 3 months old, Joel underwent surgery to fenestrate the cyst. It was not successful and after a shunt was implanted, he caught an infection and was on a drain for 3 weeks, after which the cyst collapsed. Today, he is without a shunt and is learning to read and ride a bike. He meets all his developmental milestones and brings us more joy than I could put into words. Though I understand why it must be part of the conversation, it still haunts me that a termination was offered so casually. The care we received, in the end, was helpful and empowered us in our roles and decision-making. I believe that all parents in similar circumstances should receive comparable care: adopting these recommendations would make that so.