When reassurance is less than reassuring
I am sure that there are many reasons as to why the last few weeks have been increasingly difficult emotionally. Why I have needed more support and more reassurance and why I have turned up at MAU twice in one week. As time moves forwards and this baby grows, the reality that we may be lucky enough to bring them home becomes greater. As their kicks, rolls and jabs get stronger, as I have started to see various limbs poke outwards from my protruding belly, I have suddenly become acutely aware that this really is a little person. And it’s a little person that I have allowed myself to get attached to and to admit that I love.
This isn’t easy in pregnancy after loss. I have spent most of the time in a state of detachment, trying not to get too attached or to let my hopes run away with me – after all, there are no guarantees right? Of course, I know that this is futile, and that my hopes were sky high as soon as we even started thinking about having another baby. But there is a part of your mind and soul that tries as best it can to protect you.
With each milestone reached, each scan than that we get to see our baby, the stakes feel higher and higher. You feel that you have so much more to lose. And when you have lost a baby at term, you know that there is no safe zone where you can breathe a sigh of relief. There is no point at which you can just relax. However, having a good care plan means that various measures have been put in place to provide some reassurance, albeit fleeting until the next dose, through scans, midwife appointments and CTG monitoring, increasing in frequency as we entered the third trimester.
But what happens when reassurance is less than reassuring?
At our 28-week scan, we learnt that extra reassurance can have a side effect all of its own, throwing up extra curveballs and anxieties that we didn’t know existed. Maybe ones that we would never have known about without this extra care. A double-edged sword in many respects.
We are lucky enough to be under the care of an incredible hospital with fantastic research and technology, which means that scans are lengthy, detailed and beamed onto a large plasma screen on the wall at the bottom of your bed. You have instant access to 3D pictures and the corridors are bustling with world class experts. An anxious pregnant after loss couple’s dream. But when your additional scan throws up something new, something unexpected, it just whips the carpet from under your feet.
Our 28-week scan had been booked since we passed the 12-week mark. The gap between 21 and 28 weeks felt insurmountable, yet here we were, waiting in the familiar light and airy atrium waiting to be reassured. The scan went generally without concern; heartbeat seen instantly, lots of movement, anatomically all looking great, good size baby already. But then things suddenly became uneasily familiar:
– The sonographer says that she wants to take you to another room to get a closer look of the heart on a better machine. This machine isn’t that good.
– You’ve heard this before. Just 9 months before. ‘This machine isn’t great, I’ll just get another one’. The worry on the midwifes face. The need to get additional equipment that confirmed the devastating news.
– The sonographer reassures you that everything is fine. They just want a closer look.
– You try to convince yourself that this is true – after all, you just saw your baby bouncing around on the screen. Didn’t you?
– Self-doubt creeps in and alarm bells ring deafeningly in your ears.
– You are asked to wait in the corridor. Sweaty palms, tearful and mind racing.
– There is someone else in the room that you apparently need. And they are taking ages.
– You feel out of control.
– You start to cry.
– After what feels like an age you are called in. The room is full of people.
– Then someone new, who you haven’t met before, introduces themselves as a Cardiac Consultant.
– Then your own heart breaks and you completely crumble.
– Everything is not okay.
– She offers some reassurance, tissues and water. But all you can say is ‘my first baby died’. You have to lie back and let her do her thing on the specialist cardiac ultrasound machine, on a screen that you can’t see.
– Your mind and body no longer feel connected. You feel as though you have been transported back nine months: vulnerable, not in control, waiting to have your life destroyed. This is what it is like to have a flashback.
– A million and one scenarios race through your mind; will the baby survive? Will they need surgery? Do you have the strength to do this? Would you survive?
– Your body remains still as she rolls the camera over the cold jelly on your belly.
– Tears run silently down your face and collect on the tissue covered bed.
– And then you’re sat up and the lights are switched on. And she starts talking whilst three other people stand and stare at you.
– You’re offered more tissues and water.
– She sketches a diagram of a heart and how it should work. And then she draws a hole.
– Our precious baby has a hole in their heart.
– She reassures you that the heart is anatomically great, everything is where it should be and the hole that has been identified is small and hopefully nothing to worry about.
– She says that many people are walking around with such holes and will never even know about it.
– She acknowledges that if we hadn’t had this scan at this hospital, then we too may never have known.
– But now we do.
-And on top of everything else, we have another hurdle to face. Another challenge. Another anxiety to add to the already overflowing list.
Then come the questions: Could this be related to Orla’s death? Can this cause problems in pregnancy? How likely is it that this baby will need treatment or surgery? The consultant was reassuring; she took her time and eased our panic. She said that a referral would be made to the Children’s Hospital after birth and baby would need to be scanned in the first few weeks. She explained that we may need no other treatment, that it could resolve itself or at least not cause ongoing problems. But there is always a possibility. And we will need to keep a closer eye on how baby progresses, to look out for signs of potential difficulties.
Cognitively, this all makes sense. Looking at the facts alone, you can reassure yourself that hopefully things will all be okay. That this may not be anything worry about. That even if treatment is needed, it can be successful. That you know of other people with similar conditions. Yet, when you have already lost a child, even the slightest fear that you could lose another is enough to send you over the edge. When your reserves are already running low just by trying to be ‘normal’, any additional stressors are utterly exhausting. They knock the wind out of your sails and drain the life from your body. They bring fear, but they also bring an unexpected wave of loss. It is a reminder that life is precious and unpredictable and that nothing is guaranteed.
We have learnt that sadly you don’t get a ‘free pass’ in pregnancy after loss, there are no promises of a smooth and easy ride. You hope that this is what you will get, but unfortunately it isn’t always the case. You are reminded that you do not have the carefree, happy, ‘normal’ pregnancy that you once experienced. Despite everything that I have tried to do to make this as normal an experience as possible; pregnancy yoga, continuing to work, socialising – this is sadly not a normal pregnancy and I do feel incredibly vulnerable. And this additional news has just added another layer to this vulnerability. It has stripped me of my armour that I had worked so hard to build and shaken me abruptly out of my detached state. And now I feel the fear – I really feel it. And I need other people to reassure me, because I can no longer do it all myself.
Yet I know it could be worse. And with all this said, I am still grateful that we have been able to have this extra care and oversight. I feel less reassured and more anxious, but we now have even more people keeping a close eye on this baby now, at birth and afterwards.
I just hope that I can learn how to manage my own anxieties when I parent. That I don’t lie awake at night watching every breath that my baby takes. That I don’t wrap them up in cotton wool and prevent them from doing the things that they want to do. From the outset, one of my biggest fears (apart from bringing home a live and healthy baby), is that I will is some way screw my child up due to my own worries and fears. As a psychologist, you can sometimes can know too much. But those worries can be parked for another day and another time. For now, I just need to get to the next milestone and hope that this one is a little more plain sailing. That this reassurance scan is indeed reassuring.