Aurelia's face at 23 weeks

Update: Next steps

We had another appointment with our consultant from the Whittington on Friday. It was mainly a dotting the i’s and crossing the t’s type appointment to check we understand Aurelia’s condition and the decision we have made to carry her to full term, or as far as her little body is able to go. Furthermore it was a chance to start talking more about what pre, during and post birth will all look like and indeed to get the ball rolling for those arrangements as whilst it’s likely I’ll make it to the end, there’s also a higher than normal risk there’ll be complications which would result in me going into early labour.

Our consultant was once again lovely but she takes a more pessimistic view on how much time we might get with her after she is born – perhaps only a minute which, when we’re praying for time, is painfully short. This is because her chest is so little and because we are unlikely to intervene in any way with Aurelia after she is born other than to ensure she is comfortable. We continue to hope however that those precious minutes may be extended, as long as that doesn’t mean she will suffer of course.

Don’t get me wrong, Gerard and I are under no illusions about Aurelia’s prognosis, indeed given her little legs haven’t grown a millimetre in the last two weeks, we know her condition is likely to worsen from a proportional perspective as the pregnancy continues. However it struck me how this lack of hope changes treatment and care. It was made clear to me by the consultant that any medical decisions which put Aurelia over me would, in her opinion, be deemed unethical which is why they are so keen to avoid a caesarean (don’t want to get into this debate here but in the doctors opinion unless it was needed to save my life or health in this case she feels the risk is too high). Furthermore, if Aurelia shows any sign of fetal distress such as slowing of her heartbeat they won’t intervene. I understand but at the same time it goes against all my motherly instincts to protect her and want the best for her.

The other thing that intrigued me about yesterday’s appointment was that preparing a birth plan in our case isn’t necessarily just about preparing ourselves but preparing  the medical team around us. We are moving house soon and will be at a smaller hospital when Aurelia is born. Babies carried to term with conditions such as Aurelia’s are rare enough at big hospitals, so, as our consultant pointed out, this may be the first time and last time  our midwife has to deal with a situation like this one. It’s therefore important for the midwife to have a clear idea of the plan too. I’d never thought of it like that before- I suppose you wrongly assume all the medical team will know everything about anything, but of course they can’t. I’ll admit this slightly unnerves me, but it’s also good to be aware of, if nothing else, in order to manage expectations.

In more chirpy news we got to see Aurelia again which was lovely. My (biased) proud moment came when the consultant proclaimed she is very cute. I of course totally agree, as did Aurelia who promptly indulged us with a very sweet little stretch pose and some opening and closing of her mouth for us to coo over. She’s a little poser (just like her father- ahem!). Less cute was when the consultant showed us her face straight on. For anyone who hasn’t seen this on an ultrasound it’s quite strange as an ultrasound obviously sees through skin so her eyes looked HUGE and frankly a bit spooky (hence why they usually give you the profile shots)- Gerard being a proud dad however continued to stubbornly maintain she looked beautiful though! Finally the consultant sent us off with this gem of a snap of the bottom of her foot- love it!

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2 thoughts on “Update: Next steps

  1. Pete says:

    Thank you Gerard, Becky and Aurelia, we will continue the journey together. It is a privilege, we send our love and prayers to you all. Pete & Christine

    Like

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