Antenatal counselling for paediatric surgeons is principally to provide the parents-to-be with evidence-based information on the surgical management of the presumed diagnosis, to answer their questions and to help support them make informed decisions. We are not obstetricians or neonatologists and it is not appropriate for us to try and answer their specialized questions on anything other than the paediatric surgical management of the condition; albeit some of the more general questions we can cover and we may have a preference on the need, or not, for caesarean section. Ideally, therefore, antenatal counselling should be carried out in a multidisciplinary clinic alongside specialized feto-maternal obstetricians and neonatologists. When this is not possible, patients should be provided with the opportunity to meet the other disciplines separately.
Everyone will have their own approach to the consultation and this post is not claiming to be the only technique but aims to provide a reproducible structure which you can adapt as you see fit; in my view, it’s a pretty good start. As per any patient interaction start by checking what they already know. The antenatal counselling should then cover the following 5 questions; four ‘what’s’ and one ‘where’:
What is the anomaly?
Basic description of the abnormality and how it is different compared to normal anatomy. This is also the chance to explain what we have seen on imaging that raises the suspicion of the specific diagnosis, any potential differential diagnoses and any common associations. For example, polyhydramnios and an absent stomach bubble being suggestive of oesophageal atresia, but that there are some rarer things it may be any we will, therefore, confirm the diagnosis after birth. If the child has got oesophageal atresia there are also some other associations we would also look for and the baby would, therefore, have a renal and heart scan etc after birth. You have to gage each consultation to work out the right level of detail for that parent/parents.
What is going to happen in the rest of the pregnancy?
Most of this should be left to the obstetrician to answer, but if counselling on your own, a general description of follow up scans and what is being looked for / what we might be worried about – e.g. hydrops in lung lesions or intra-abdominal bowel dilatation in gastroschisis.
What will happen after delivery?
Brief description of what they should expect, for example, that a congenital diaphragmatic hernia will be electively intubated or a congenital lung lesion will be observed
Are there other investigations that need to occur, for example, is there a potential for an associated cardiac anomaly that may not have been antenatally detected.
What are the likely long term implications?
Is there associated mortality or potential long term issues such as continence with myelomeningocele?The details vary depending on the anomaly but we have a duty to be honest and clear. Parents will also vary and different people will want different levels of information. Offering a chance for a second antenatal counselling session may help reduce anxiety, and providing written information allows parents to relook at the information in their own time frame.
Where will they deliver?
Do they need to deliver at your centre or can they deliver nearer to home? This will vary based on the likely diagnosis and geography. In the UK, with a child unlikely to need intervention, delivering nearer to home may be the most appropriate. In Australia where there’s the potential, the child may need transfer and the paediatric surgery centre is thousands of miles/kilometres away then delivering in the paediatric surgery centre to prevent mum and baby being separated postnatally may be more sensible. Also worth reassuring them that if there’s an emergency, they go to the nearest centre and they will be appropriately managed which may include transfer, but allows them and the foetus to be checked.
Additional tips to consider:
Ask if they know the sex – it makes the consultation more personable and allows you to avoid the awkward ‘it’ reference. Some carers may even use a name.
One of my colleagues always starts by stating it is NOT the fault of the parents – he backs this up with an explanation of why; I think this is really good for the parents to hear, but be careful with gastroschisis in recreational drug abusers for example (Risks of gastroschisis ).
Be as positive as possible but don’t give false hope – neither they nor you can change the diagnosis and pregnancy is stressful enough without making the next few weeks harder. They need to know that they are safe, we will deal with whatever we face as it happens and that they and their child will get excellent care. BUT, do not give false hope. Unfortunately, not all congenital diaphragmatic hernias will have a good outcome. Be realistic, be fair.
Do not get bogged down in minutiae – tell them the most likely outcome, not every little detail; most babies with gastroschisis are discharged fully fed at 6 weeks. Some babies take a bit longer, some get home earlier. There are some babies with gastroschisis that also have an associated blockage in the bowel (atresia) which needs further surgery, but we will deal with that if it occurs. They do not need to know at this stage about the rare risks of NEC, or late adhesional obstruction, or distress with the umbilical appearance in gastroschisis.
Finally, termination of pregnancy – it is not our role to advocate for or against termination of pregnancy. The structure outlined above allows us to provide parents with the information available, an idea of how confident we are in the diagnosis and the overall likely long term implications. With clear and honest information provided to them the parents can then decide how they wish to progress with the pregnancy.
Antenatal diagnosis of surgically correctable anomalies: effects of repeated consultations on parental anxiety. Aite L, Trucchi A, Nahom A, Zaccara A, La Sala E, Bagolan P. J Perinatol. 2003 Dec;23(8):652-4. doi: 10.1038/sj.jp.7210992.