14 August 2016

Rumer's Story, part 20

Neonatal & Palliative Care meeting: II

Thursday 2nd July 2015
27 weeks pregnant

Keen to bring the discussion back to treatment options, Chris proceeded to describe our understanding of the pregnancy risks and how we wanted to mitigate them (eg. close monitoring, c-section). He wanted to show our thinking about how to manage the obstetric problems, since that was what we were most familiar with at this point, thinking that that would give Ida an idea of the general approach we wanted to take in order to set the tone for the discussion about postnatal management. He also wanted to illustrate that we were realistic about the high rates of stillbirth and neonatal death; that we were going into this with our eyes open.

However, Ida, seemingly thinking this irrelevant – perhaps partly because Chris, being nervous and under pressure, was a bit hesitant and waffly – interrupted quickly to remind us that “my job is after Baby's born”. Chris was taken aback, as he was about to describe interventions we were considering, and protested that he wanted to carry on with his point. (It was notable that whenever we approached the subject of interventions, Ida was keen to redirect the conversation.) But Ida continued without losing pace.

4D scan picture of Rumer at 24 weeks

I tried to take over from Chris to explain our thoughts about care for Rumer postnatally, but Ida didn't seem to want to go down that road either any more, once again interrupting to ask, “Has she got a name?” A few minutes' discussion ensued about Rumer's name, its spelling and origin, which celebrity child shared the name, how her parents chose the name...

After a while, I managed to drag the conversation back to the subject of treatment for Rumer. I said that we knew her presentation was not straightforward trisomy 18, due to the cardiac problems, diaphragmatic hernia/eventration and likely pulmonary hypoplasia, and that she therefore was likely to do less well than a child with trisomy 18 without these additional issues. I explained that Evan Marshall (fetal cardiologist) didn't think the cardiac issues would present an immediate risk to her survival at birth, and that we understood from the research that this was generally the case with trisomy 18: that cardiac issues tend to be a longer-term problem but are not usually the cause of death in very young babies. Throughout this, Ida nodded along, at last allowing me to continue.

I then brought up what turned out to be the controversial subject of apnea management. Dr Leigh willingly agreed that apnea was a common feature of trisomy 18. I mentioned some research we'd found that described the use of anti-epileptic drugs (AEDs) to manage some apneas in trisomy 18. I also noted that obstructive airway issues (eg. floppy airways, tongue blocking airways, etc.) were common in babies with trisomy 18, but were often misdiagnosed as central apneas (caused by the brain 'forgetting' to breathe).

I went on to explain that we wanted to ‘play it by ear’: if Rumer was born in a very poor condition, there would be no point in pursuing “really active treatment”. If, however, she was  doing ok, we would want to pursue active treatment, including intubation and ventilation, and if she developed apneas, we'd want to evaluate and treat them appropriately rather than dismissing them ‘because she's got trisomy 18’. Chris, having recovered a little, agreed, stating that we wanted to evaluate and treat issues as they arose, unless it was “totally a ridiculous situation”, as would be done for any other baby.

Realising that Ida and Tegan hadn't contributed anything for a while, and worrying that we were coming across too strongly at this point, I chimed in to explain that we weren't expecting long-term survival – not three years, not 20; maybe an extra month or two if we were lucky*.

Again, discussion of active treatment seemed to make both doctors uncomfortable. Ida, clearly unsure how to respond to any of this, said, “Yeah. I mean I think we'll see Tegan's got a lot of experience with it because of her job and, for us, we see babies that do make it,” and turned to her colleague.

* We later came to realise that, with good medical care, significantly longer-term survival is not as unlikely as parents are often lead to believe. The field was new to us, and we had hoped for open discussion and information. But what happened instead, and continued to happen, was polarisation, in which we found ourselves pushed into opposition with the medics, leading to defensiveness rather than collaboration.

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