1 August 2016

Rumer's Story, part 19

Neonatal & Palliative Care meeting: I

Thursday 2nd July 2015
27 weeks pregnant

So we got back to the now very busy Fetal Medicine Unit (FMU) waiting room around 12:20 and waited. And waited, and waited. At 1pm, half an hour after the appointment should have begun, we spotted the neonatal consultant, Ida Leigh, chatting to George Donnachie; he ushered her into his room in his usual charming manner. And we waited; we remarked to each other that had we known it would be this long, we'd have had some lunch – by this time we were very hungry after our early start.

At 1:30, Chris went to use the loo, and of course this is when Ida came to take us to the now very familiar FMU quiet room. He returned and we all went in together and the Palliative Care consultant, Tegan Blackman, introduced herself and the Palliative Care nurse, Jessica Duncalfe. We all shook hands and sat down and...silence. After several uncomfortable seconds, I said, “Do you want us to start?” Ida Leigh said, “Yes, tell us all about it. Tell us what's in your hearts, and minds.”

Ultrasound picture of Rumer
We wanted to explore all options for Rumer

A bit taken aback, I started recounting the cardiology appointment from earlier in the week, mentioning that Prof. Marshall had discussed the risks of cardiac surgery. I emphasised that we were thinking that we would like Rumer treated as any other baby would be, provided that the benefits weren't massively outweighed by the risks, and that we had spoken to cardiology along these lines. Ida and Tegan already seemed uncomfortable, with Tegan staying silent for long periods and Ida very hesitant, seemingly unsure of how to proceed.

Eventually, Tegan ventured, “You seem to want things managed actively. To make sure we're understanding each other, what do you see as active?” At this stage, it was all quite new to us; we'd only recently begun to look into our options and what we might want. We certainly thought we'd want to avoid an entirely palliative approach, but weren't sure which interventions we might and might not want to opt for, largely because we hadn't had much time to explore the risks and benefits of different treatments, or even what sort of issues Rumer might present with. We'd hoped that this appointment would be an opportunity to understand more about the issues that children with trisomy 18 have. In retrospect, however, I think we already knew more about the nature of trisomy 18 than either of the doctors did.

Tentatively, therefore, I said that we thought we would opt for active resuscitation, but that I wasn't quite sure how far we would want to go. At this, Ida interrupted to clarify that I was a midwife. She seemed to want to change the direction of the conversation in order to build a rapport. She tried to take us back to the time of diagnosis, asking what was “in [our] hearts and in [our] heads”, so they could “do what's best for [us] as a family unit.” She told us that she knew we'd been trying to have a baby for a while, and that it was a “totally devastating scenario.” Honestly, that wasn't really how we felt and we found it irrelevant to the question of resuscitation.

So we described the long path to diagnosis via diaphragmatic hernia, heart defects and brain anomaly, and how we had gradually begun to suspect trisomy 18, and therefore the eventual diagnosis had not come as a complete shock. Eventually, Ida seemed to get bored with all of this, and said, “So now we've got a diagnosis; I'm presuming you'll have done all your reading.” At this stage we were still in our early stages of research and kept coming across new papers. So, enthused, I said, “We've got a lovely 2012 review on trisomy 18,” (Cereda & Carey 2012 (PDF)). Ida didn't seem terribly interested, however, declaring that she wanted to know how we saw things working out; what was important to us; and once again “what was in [our] hearts and heads”.

It did not escape our notice that our discussion of resuscitation at birth had been deflected. We hoped we would be getting back to this later in the conversation.

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