Aurelia's face at 23 weeks

Update: Decisions

Earlier this week was our final appointment at the Whittington before being handed over to Frimley Park where Aurelia will be born.

Before the appointment I knew it was probably the beginning of the end. Before we moved and the arrival of our new puppy member of the family (more on that later) I suppose I somehow felt Aurelia’s birth was a long way off. With those events now having occurred it suddenly seemed much closer and, as we entered June, having read other people’s stories, I knew we were likely talking weeks rather than months.

The first part of the appointment with a midwife and a neonatologist was in many ways reassuring. We discussed our plans for labour including our choice is that if she shows sign of fetal distress (i.e. her heart rate slows) we will not elect to have an emergency cesarean nor are we going to constantly monitor her. I suppose the thinking behind this was that a) we want to keep things as calm and natural as possible b) if she is born alive we’d like me to be as mobile and ‘with it’ as possible which would be harder if we had a cesarean and c) we have to weigh up the risks  for me too.

We also discussed care for Aurelia after she’s born. Again we’ve made the choice to keep things as calm and natural as possible. There’ll be various options depending on how much she is able to breathe. Whatever, she’ll go straight onto my chest and will remain with Gerard and I for any of her life. Any ‘intervention’ will be as minimal as possible to ensure the treatment she receives doesn’t cause her any suffering. It was also nice to hear that the palliative care team at Great Ormond Street (only the best for my girl!) are being pulled in to advise  on the best lines of treatment for her depending on how long her little body wants to live for.

The key point is she will not suffer.

The scan was less reassuring. Even with my untrained eye I could see her symptoms have only become worse, particularly her legs which have developed the distinctive folds of skin common in this dysplasia. The key finding however is that her head is now above the top centile, with her head now being the size of 35 week old baby’s. This has implications for how soon we induce.If we leave it too late, due to both the size and shape of her head, she simply won’t fit.

Now we’re moving to Frimley the consultant obstetrician wasn’t particularly willing to give us  a recommendation for what we should do next. To me it felt like she was a little exasperated with us in the sense of either we should induce her as soon as possible (as opposed to waiting a few more weeks), just let it all happen naturally and end up having a cesarean, or as she reminded us once again have a termination.

However the whole team were in the room, and with our prompting of reminding them we want to try and get the best balance as possible between what is best for Aurelia and also the risks to my health, the recommendation is that we induce around 34-36 weeks. This would give Aurelia’s lungs the best chance to develop a little to have some time with us and would mean she’s unlikely to be too big for me to deliver naturally. This means we’re looking at a likely day of mid-July for induction but I will likely be scanned now every couple of weeks to monitor her head size in particular.

What was fairly clear is how in the dark many of the medics are. With so few babies born with this condition it’s so hard for them to predict what will happen, which as I vocalised in the meeting is incredibly frustrating. All we can do is make plans for various situations.

The other key finding from the scan is that I’ve started to develop polyhydramnosis (excess amniotic fluid). This is a sign Aurelia is not developing as she should be as usually babies swallow and breathe in amniotic fluid which maintains the level in the womb. It’s a very common condition to develop when carrying a baby with a condition like Aurelia’s. I’d suspected this had started for the last few weeks as my bump is measuring 3-4 weeks ahead and with having an increasing sense of breathlessness at times that I’d started with it.

To reassure people it’s no real risk to me. It’s currently mild but if it gets bad I’ll be pretty uncomfortable (and look even more whale like!). If I did get it badly I’d either have to have it drained, be induced or it may just kick start early labour.

I’ll admit it’s getting harder now- we know what we’ve been dreading is looming and we don’t feel ready to say goodbye. I doubt we ever will. I have no regrets at having taking the path we chose. Yes we’ve ‘drawn’ things out. Yes we’ve grown to love her even more (which we never thought possible). But every kick or wriggle has made it totally worth it. For me, just her being with me for this time has been a more precious experience that I could ever have imagined.

Every situation is unique, but I want to say firmly to any parents who ever have to go through something similar, please know there is a choice as to what is best for your baby. Never assume simply ending the pregnancy will be best for yourselves and for baby. We’ve been so very blessed by having time with Aurelia to enjoy her, and we know she’s not suffering in any way. Indeed I’ve loved seeing the midwife’s faces as they put the doppler on her – I may be wrong but I sometimes think they expect to hear a ‘poorly’ heartbeat and instead they hear her heart galloping along and her happily wiggling around. As one midwife put it, she’s very happy in there. And that for me is what this is all about.

 

 

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