I don’t remember the journey back from the ultrasound room – it’s all a blur – but I do remember arriving back at my room on the delivery suite. It was a nice January day; bright outside; but inside we were glum. Again.
I had just returned from having an ultrasound scan to check whether a stitch could be inserted into my cervix, in an attempt to keep my baby inside my womb. I was two centimetres dilated, and at only 23 weeks plus 2 days into my pregnancy. There was no apparent reason why this had happened, and I had been admitted to the hospital the night before.
The possibility of having the stitch had come as a huge relief and surprise to me and my husband Dave when we had been told that morning. The night before, we had been told that the insertion of a cervical stitch wouldn’t be possible. Without a stitch, I was probably going to give birth in the very near future and, as a result of extreme prematurity, our baby would likely die.
Ten minutes before the scan we had been on such a high; riding a wave of excitement and relief, expecting that something could be done to pull us out of this deep ditch that we were in. But now, we weren’t so good again. Something wasn’t right with the scan; we just knew it. Although we hadn’t been informed as such yet, the radiologist’s body language had told us so, and I felt sick to my stomach, sitting there in a sorry state, waiting for the doctors to arrive to give us the bad news.
Before the doctors arrived, Dave and I went over the same ground. We analysed the radiologist’s body language; our midwife Carmen’s behaviour on the journey back to the delivery suite; and we reiterated for the umpteenth time that we shouldn’t assume the worst and we should wait to see what the doctors had to say. If only we could have listened to our own advice.
It felt like forever before the doctors arrived, although I’m sure that wasn’t the case. Then they appeared, and suddenly I wanted them to go away again. I didn’t want to hear it. If they didn’t say it then it wouldn’t be true; it wouldn’t be a reality; whatever “it” was.
A small group of doctors stood at the door and I instantly examined their faces. “Is my gut instinct right or wrong?”, I immediately asked myself. A female doctor took the lead. I remember her clearly: tall and slim, quite young, wearing the white coat with a purposely lopsided, quirky haircut and chunky black boots. She didn’t resemble most people’s stereotype of a doctor. I only say this because this is one of the reasons I remember her so clearly. She introduced herself with the other doctors stood around her and got straight to it.
Instantly my heart started pounding and I sat there holding my breath. The anticipation was unbearable; all consuming. Even though she hadn’t yet given us any bad news, I had convinced myself that the news was just that. If I had already decided the news was bad, then it was all on my terms and what she had to say wouldn’t shock me; and the upset wouldn’t be as painful. It wouldn’t be worsened by surprise. Well that was my theory anyway.
Even though I had driven myself into defeat and had no energy, that tiny glimmer of hope was still there. A desperate hope that she’d tell us that the stitch could be inserted; hope that my gut instinct was wrong; hope that my baby wouldn’t be born any time soon and hope for all that could be positive in this situation. Then it came …
“We’ve examined the ultrasound scan taken of your cervix and unfortunately we are all in agreement that a cervical stitch cannot be inserted. Having looked at the scan it’s clear that there is only half a centimetre of your cervix left without the membranes being present.”
I must have looked confused because she began speaking again:
“the membranes or amniotic sac is only 0.5 centimetres away from the opening of your cervix.”
I listened carefully; expressionless until she had finished. Then I asked, “so without a doubt, the procedure absolutely cannot be done? There’s no way?”
I understood; it was clear; but I wanted to make sure, in no uncertain terms, that there was absolutely NOTHING that could be done. For me, there’s very little worse than when a doctor walks away and you still don’t feel fully informed of the situation. Your nasty brain takes you to hell town because you don’t have all the facts and your mind spirals out of control. The facts can be terrible too, mind you, but being informed is far better than allowing your mind to take you in all kinds of directions. At least when you know, you know.
Already deflating at the thought of her saying, “yes”, I reiterated what she said anyway in case I had misunderstood. Praying I got it wrong I said, “so basically the amniotic sac is only 0.5 centimetres away from the opening of my cervix?”
She said; “yes”. I wasn’t wrong.
Although composed on the outside, I wanted to cry. There were many times during my hospital admission leading up to the birth of my child and afterwards, when things happened or were said that forced me, head on collision style, to realise the awful reality that we were living in. I’m talking about humdinger, heart missing-a-beat type moments. If you’ve been reading my blog updates, you may remember my talking in a previous post about a conversation with a senior NICU doctor on call when he made that life changing statement:
“a foetus isn’t considered viable for life outside the body until 24 weeks gestation.”
Well, as I’ve said before, that was the first of such moments, when we were smashed in the face by a sudden, very clear window into the reality of our situation and what this doctor, currently standing before me, had just said was probably the second of those moments. There were many more to follow.
I thought, “My God! This is physically how close he or she is to the world; how close he or she is to the planet; to air; oxygen and it’s just far too soon!”
The doctor continued to say, “this is a tricky procedure at the best of times and at this late stage it isn’t guaranteed to work. A preventative stitch is far more successful than an emergency stitch and, with such little room to work, the risk of piercing the amniotic sac is far too great. The stitching apparatus is a fair width and the amount of thread needed is a fair length, so with only 0.5 centimetres of your cervix left there is practically no room to manoeuvre a stitch. The most capable professional would be too concerned about piercing the amniotic sac in a case like this. If we were to pierce the sac, labour would be induced. Your baby is still in there and currently you’re not showing any signs of labour. It could be the case that with bed rest your baby may stay inside the womb for a number of weeks yet.”
In desperation, I said, “okay, so you really think that could be a possibility then?” “I’ve seen it happen before”, she said, “and that’s what we want; for the baby to stay inside the womb for as long as possible. We won’t risk jeopardising that possibility.”
I completely agreed with her; I didn’t want to risk my baby coming out either but I just desperately wished we weren’t in this predicament. I wanted to say, “I get it, but just do the procedure and just don’t pierce the sac! Just don’t pierce it!”
I was crushed; we both were; but as sensible people we didn’t argue or beg. Instead we were quiet; simply heart-broken with not much fuel left in the tank. The only way I can describe how I felt at this point is as if all I had left was to just hold my arms up, lay back and surrender to the darkness. I wanted to close my eyes and have the darkness take me. I didn’t want to be here anymore and I’m not even sure what that means. I had lost myself a little, as I did more than once. I eventually came back, though; I always did.
There was nothing more to say and I could tell that their cue to leave was coming; but I wasn’t quite ready to let them to go.
“Is there anything else? Is there anything missing? Anything I’ve not asked?”, I thought to myself. Searching for the slightest bit of hope out of all that she had just said, I repeated, “so as you just said, it may be a possibility that with bed rest I could be like this for weeks? Dilated but with the baby still inside?”
She said, “yes, I’ve seen it happen before. I remember one case where the woman was dilated and we could clearly see the membranes and the baby’s shoulder. It was not easy for the mother having to lay down for the vast majority of her time but the baby stayed in there for many weeks and its chances of survival were significantly increased. I mean we don’t know if that’ll happen here; we can only wait and see but it does happen sometimes.”
I have to say that I didn’t really care for this doctor’s style of delivery. She was hard; direct; she shrugged her shoulders a lot and she spoke as though she was speaking to a third party about me, not to me; the mother whose child’s life was in grave danger. She seemed to lack empathy and she rubbed me up the wrong way. Maybe it’s how she gets through conversations like these; I mean I wouldn’t want to be delivering news like this, or maybe it’s just how she is. Either way, it didn’t really matter because she had given me a hopeful example of a more positive situation and I was going to go with that. Regardless of her bedside manner, and my being a little pissed off in the midst of it, I felt a little better at the end. I mean, what’s more important, what she says, or the way she says it?
I asked another question and, although I can’t remember exactly what it was, I’ll never forget her response. It’s something Dave and I laugh about now. Regarding the life chances of severely premature babies, she said, “we just don’t know. If your baby survives, it could have severe physical and learning disability, or it could just simply be the case that if born at 40 weeks gestation, he or she would have gone to Oxford University, but, if born premature, he or she will only get to go to Cardiff University.”
I just looked at her, thoughts running around my head in a frantic fashion, confused. I mean, what the hell did that mean?
After a few seconds, I got that the Uni scenario was just a way of explaining the remote possibility that our child’s problems could be insignificant, but, at the time, in my stressed consumed, muddied up brain, I might have taken it the wrong way for a second. Again, her style of delivery didn’t help with that.
After she left, I remember saying to Dave, “is she saying our child is probably going to be thick or what?!” Then I quickly thought, “well if we found ourselves in the future worrying about our child’s choice of university, then that would be a dream come true!”
At this stage, all we could hope for was survival. So his or her being intelligent simply was the least of our worries. I remember saying to Dave, “I couldn’t care less if our baby was as thick as shit; the most we can hope for (if he or she survives) is that he or she has the basic skills to carry him or her through life. Everything else is a bonus.” Dave agreed.
Then, strangely, this woman, and her abrupt ways, somehow pushed me into a good place mentally. She talked about the possibility of a future, in the context of my child, and although this future was unlikely, she took me there. And that was enough to get me through until the next emotional crash came. She left me feeling positive.
We still didn’t really know why this had happened to me, nor what was going to happen in terms of our baby’s early arrival. The doctors didn’t either, but now that we knew I didn’t have an infection, we had to consider the possibility that an incompetent cervix caused the problem; and, as a result, the possibility that I would need to get as much bed rest as possible to keep our baby safe.
So since Dave had brought our iPad with him, we decided to see what was new on Netflix; we started watching ‘Orange Is The New Black’. We love a good box set and go through them very quickly once we start; and, as we were feeling quite positive, we didn’t feel too preoccupied to watch something. In fact, we needed something to take our minds of our situation.
I have to say that we watched OITNB on and off throughout our hospital stay, and beyond. It was light, easy to watch and it put a smile on our faces every now and again. I would recommend that tactic to anyone currently going through this journey: try to find something to distract you.
Whether it’s a book, a DVD, music, or anything else, just try, because the situation will consume you. I’m an over thinker at the best of times; generally, and in every-day life; so, in an attempt to not analyse every single look, every sentence spoken to us, every sigh, I threw myself into this show and it worked (sometimes).
Later that afternoon, my mother and sister came to visit us. It wasn’t the allocated visiting hour, but, given the circumstances, they were allowed in. They brought additional bits and pieces that both Dave and I needed. I remember clearly how they looked; both visibly very sad.
My sister, who is far more outwardly emotional than me was red in the face; she had either been crying or was red from holding back the tears. She didn’t say a great deal to begin with, and I knew it was because she was afraid that if she spoke, she’d burst into tears. She probably didn’t have the words either.
Before coming into the room, my midwife Carmen had spoken to them privately. She explained that I was okay and that the baby was really well. She said, “this is the sad thing, there’s nothing wrong with the baby; it’s really strong and well; but if it’s born now, it doesn’t look good.”
My mother thought that Carmen had said, “he” is strong and well, and she started to cry at hearing what she thought was the sex of the baby (nobody knew as we made the decision not to find out). Thinking she knew our baby’s sex made it all the more personal for her, and this saddened her greatly. Carmen clarified that she didn’t know the sex of the baby and she told my mother that she needed to be strong for me. She said that I was doing okay, but it wouldn’t be a help to me if she and my sister were upset. In fairness, I doubt they would have come into my room and done anything to make me feel worse; and I expect that my mother would have pulled herself together before coming in; but Carmen needed to make sure.
When they walked into the room the shock factor hit me again. I speak to my mother on a daily basis and I had spent a lovely day with her clearing out one of my spare rooms in preparation for the baby’s nursery only three days before.
The last time I had seen her, everything was lovely; and now we were here. In the space of a few hours we had gone from complete normality (which is a positive thing in our case) to this living hell, and I hadn’t seen her in-between, so you can imagine how the sight of her face triggered an involuntary, instantaneous re-run of the past 17-20 hours. How could so much have unfolded in such a short space of time? The calm before the storm; the initial shock; the twists and turns; ups and downs all came flooding back to me at the sight of my mother’s face. I couldn’t understand how so much had happened in such a short space of time, all since our last telephone conversation. Our faces both asked the same question.
My sister, still red faced, sat on a chair near the bottom of the bed and my mother sat by the window to my right. My mother asked how we were and, quickly, the conversation about all that had unfolded got underway.
They both asked the questions that Dave and I had asked the doctors, and I explained all that we’d been told. I felt more positive after speaking to the last doctor, but that feeling of positivity had come to an end by now. We had been left alone for a little while, and my mind had started working over time again. Now I was feeling low, and the process of having to relay the story to my family made me feel even worse; if that were possible. Saying it out loud made it all so obviously terrible; it made me think, “how in the hell can this baby ever make it?!
Listening to the story that I had to tell, my mother and sister sat there quietly, teary eyed; both were shocked, trying to make sense of it all. I held nothing back. I explained everything in full, and my obvious despair when talking to them probably convinced them that all was lost; everything was hopeless. I’d be gobsmacked if it didn’t have that effect.
In fairness to me, all being lost was the most likely outcome if our baby was born anytime soon, but I do have a way of unintentionally convincing people of my point of view, even at those times when I’m completely wrong. And, as a result, my mother responded to me. I can’t remember what she said exactly, but it seemed clear to me that she too thought that the situation was hopeless. What she said was kind and supportive, but supportive in the sense that the family will be there for us when the worse happens.
I didn’t like what I was hearing. And so, in my naturally aggressive, defensive way (my default position when my back’s against the wall or when I feel that life is against me, like now) I took my frustration and anger out on somebody I love dearly.
I snapped a little and said, “the baby’s not dead yet Mam! Don’t write it off yet!” I so wish I hadn’t done that; I wish I hadn’t said that, particularly the way I said it. It’s something that I’m still sorry about (even though when my mother reads this she’ll call me a “silly cow” for even giving it a second thought).
She said, “hey! Nicola, that’s not what I’m doing at all. Don’t think that. I’m positive. It’s going to be alright. I’ve just got a feeling.”
That was just me at this point in time: one minute feeling and practically telling people that all hope had gone, but the second anyone suggested the same, or I took it that they were, I’d be furious with them for even daring to think such a thing. What can I say? Emotions.
My mind would run away with me; take me to all kind of terrifying places but I never lost all hope completely. There was always the smallest glimmer. And that was okay; I could accept that, because I know my own thoughts and I knew that I always came back to positivity eventually. But I couldn’t know the minds of others, and I could not accept their losing hope; nor accept their pushing their negativity onto me, even if unintentionally. It was hard enough to stay afloat as it was! But with my Mam , I should have known better than to react as I did. I should have known much better.
Once my mother and sister had left, there was not much to do, really. We carried on watching ‘Orange is the new black’ and Carmen popped in and out of the room. I was afraid to get off the bed to go to the toilet in-case gravity weighed heavily on my cervix, pushing the baby further down; and every time I did go, I checked for signs of blood. Without saying anything, I closely monitored pains and tightening in my stomach, but I don’t recall them being any worse than the night before; if anything, they were better.
Already feeling physically battered from the events of that morning, Dave and I were revisited by the NICU team. The same gentleman doctor as before appeared, accompanied by his colleagues. I knew why they were there; nothing had changed; they’d have nothing else to add, but there was something they still needed to know; there was an unanswered question to deal with.
“Do you want us to resuscitate your baby at birth?”
They came into the room and the doctor asked us just that. “Have you made a decision about whether you want us to resuscitate your baby at birth?”
After the morning we’d had, the timing of the question was terrible. But when could it ever be otherwise? Still, we just weren’t ready to face this. Trying to make this decision with a clear mind when you’re in shock is almost impossible; you’re traumatised; heartbroken; and staff are in and out of your room incessantly; your time is also filled with things like scans and checks. And when there are quiet periods, you can’t, or don’t want to, think; you can’t comprehend the reality that you’re in.
However, over the course of the evening and afternoon since I’d been admitted, and throughout all of the chaos and the confused quiet periods, we were able to reach a joint decision. But were we making the right one? We just didn’t know. The frustrating, cruel thing about this predicament is that only time would, and could, tell us that.
(I’d like to point out that as this is such a complex situation, one which deserves to be covered in far more depth, I will be writing a blog in the not too distant future which is dedicated solely to our decision and our decision making process.)
Our decision had been made, but we were still liable to moments of self-doubt, so now that the NICU doctor was in front of us again, we continued to revisit old ground in an attempt to squeeze the last bit of information from him before we committed to this life changing decision.
I asked, “so if the baby is born alive you will make a resuscitation attempt if we confirm that’s what we want?” “Yes”, he said. “But the baby may not be born alive?” “That’s right”, he said. “If it’s not born alive, would an attempt to bring him or her back to life be made?” “Unfortunately not”, he said. “Okay …. and the survival rate of a 23 weeker is 20%?” “Yes”, was the response. “And half of those that survive will have some form of disability?” “Yes”, he said, “We just don’t know how a surviving child would be affected physically and neurologically when born at this gestation. We just wouldn’t know at this stage; only time would reveal that.”
Dave joined in the conversation, “so if the baby needs resuscitation when it’s born”…. the doctor interrupted, “oh it will definitely need resuscitation at birth; that’s a certainty. But what you must know is that resuscitation is not always possible, even when an attempt is made. And it may be the case that the baby is not born alive; you also need to be prepared for that. What we need to know is do you want us to make the attempt?” I asked, “so if the baby is born alive and not given resuscitation, it will then receive comfort care only? I continued, “so without resuscitation, even if born alive, it’s not going to make it on its own?” The doctor replied, “that would be extremely unlikely.”
Again, I asked about steroids to strengthen the baby’s lungs, as I had done the night before. “So if we want resuscitation, could I have the course of steroids to give the baby the best possible chance?” To my mind, if we were going to commit to this, then we ought to do it properly. We should execute every possible game plan. If we were going to agree to resuscitation, we should optimise the baby’s chances by giving him or her all the help possible. Why go in with a half-arsed attempt to giving this child a chance? Of course it wouldn’t be a half-arsed attempt, though; it just simply isn’t that black and white. Again, it was thought that steroids at this point wouldn’t be the best idea, but we were told that if we demanded them we could have them. We just didn’t know what to do. I just kept thinking about what he said before:
“you may want to consider whether you are trying to sustain a life that’s unsustainable, and whether you may be prolonging the agony for the baby and yourselves.”
If it was practically impossible for this child to survive, then I didn’t want to be the reason that he or she suffered for longer than necessary, all because I demanded steroids. My head spun. I didn’t know how much more could be thrown at us and how much more we’d be able to take. One shock after another had come our way; one incredible blow after another; and one impossible decision after another; and all in the space of a day.
But when it came down to it, I felt that I couldn’t bring this baby into the world to just watch him or her slip away. I had to give him or her a chance at survival. I remember thinking, “if this child is anything like me, anything like me at all, he or she will take any chance available and will fight like hell to make it”. That’s because there is no way on earth that I wouldn’t do that; Dave neither, for that matter.
And so, after much deliberation I said to the doctor, “we’ve decided that we’d like you to resuscitate our baby, if that’s possible. We’re aware that your attempts may not be successful but we’d at least like to give our baby a chance. We feel that we owe it to the child to do this. We’d like you to go with what the baby is telling you; what he or she is showing you. If the baby is not up for it, then don’t push it. We think we’re aware of what might lie ahead of us and we’re prepared to make further decisions when needed. We’ll deal with each hurdle as it comes, but for now, our first decision is to resuscitate.”
The doctor listened carefully to us and didn’t try to convince or influence our decision; instead he smiled and thanked us for letting them know. Now they could be prepared. I wondered what his thoughts were. I could guess.
Making the decision to resuscitate our baby was the hardest decision I’ve ever made. I knew that if they were able to resuscitate the baby, much of his or her life at the hospital, and possibly beyond, would be filled with suffering; possibly a very short life filled with suffering, right the way to the end. An early end. And that would simply be because of me. Because of my decision. And that weighed heavy on my mind.
They left and I felt as though I’d just done twelve rounds in a boxing match. This whole situation was brutal. I’m sure Dave felt the same way.