It was morning and I woke from the best night’s sleep I’d had since before my hospital admission. Granted, I had only been at the University Hospital Wales for 2 nights but it had been the darkest, most shocking and depressing time of our lives. It doesn’t get much worse in a person’s life. The sleep wasn’t perfect of course: how could it be? But my mental and physical exhaustion saw to it that I had a good few hours. I was beat.
This was my second morning at the University Hospital Wales but so much had happened that it felt as if I’d been there for weeks.
I woke up at week 23 plus 3 days into my pregnancy, and still 2 cm dilated, it seemed. At the hospital, doctors had previously made us aware that my healthy baby’s chances of survival if born at this stage were close to zero.
We had been asked to decide whether we wanted to have our baby resuscitated at birth, and despite death being the most likely outcome, we made the decision to ask that our baby be resuscitated.
As this was going on, I was also the subject of numerous medical tests. I had been taken for an ultrasound scan to see whether a stitch could be inserted into my cervix in an attempt to keep my baby inside the womb. My hopes had been raised initially that this procedure could be carried out, but I was advised after the scan that it wouldn’t be possible. My hopes were smashed into a million pieces.
When I woke up that morning, my first thoughts were about the fact that my baby was still inside the womb and that he or she didn’t seem to want to do anything to change that. But unlike the morning before, I wasn’t as optimistic about our situation. The discussions about my baby’s prospects, and the severe disappointment of the scan the day before had gotten to me. This combination of helplessness and concern for my baby had ground me down.
Having started the day before being informed that a stitch could probably be inserted into my cervix, the subsequent news that it wasn’t possible for the procedure to be performed, was crushing. It was nobody’s fault; the situation was just plain cruel. Initially we had been told the stitch wouldn’t be a possibility, so you can imagine our euphoria when we found out that it was; and you can imagine the devastation when we then found out it wouldn’t be possible after all. The stitch seemed to be the only thing that doctors could physically do to try and keep my baby inside. No one knew whether he or she was coming immediately but what we did know was that if this child came at 23 weeks’ gestation, (before viability) he or she would most likely be a late term miscarriage. I’m sure you can understand our fear and heartbreak, and I’m sure you can try to imagine our frustration at the fact that sitting and waiting was all that anyone could do for us.
Because I slept through the night I had little involvement with the midwife looking after me for this shift. He or she must have introduced themselves to us around 7pm, after Carmen left, but I have no recollection of a name or a face. That’s really unusual for me as I’m someone that has a great memory for past situations and events, including all who are present in them (my husband Dave often jokes and calls my memory ‘the database’) but I had shut down. If no one could help me then I just wanted to disappear. I didn’t trust life; I didn’t trust fate. I mean it had got us there; it had treated us cruelly since being there, so if it was going to screw us over then I wasn’t going to be present mentally. I was angry and therefore rebellious. I don’t remember the midwife who looked after me during this day either. No recollection at all. A total shut down.
The day mostly consisted of me laying down, watching Netflix and not talking much. When Dave and I did speak, we went over the same ground, trying to figure out why this had happened and trying to encourage each other to think positively.
As usual, doctors were back and forth but there was nothing new for them to cover. We were still just waiting and seeing.
As the day moved on there was talk of moving me out of the delivery suite to go down to the post natal ward. This made me happy because it was confirmation that my baby’s arrival didn’t seem to be imminent, and that was obviously a good thing. It might have meant that I could have gotten to at least week 24 of pregnancy, when my baby’s chances of survival would increase significantly. Getting to week 24 would also mean that my baby would be given steroids to strengthen its lungs and magnesium to mature it’s brain; and an attempt to resuscitate at birth would automatically be made without me and Dave having to make the decision. A decision that carried a lot of weight. I wasn’t as happy as I should have been, though, because we had been dangled a carrot before, and our hopes had come crashing down. I wasn’t going to make the mistake of getting my hopes up again. The crash was just too painful.
Another reason I wasn’t as pleased as I should have been was because I felt physically different and I had a terrible feeling that things were about to take a turn for the worst. It was nothing obvious but I had this heart sinking inkling that things were about to go downhill.
I mentioned how I felt to my mother when she came to visit that day. I told her that the tightening had started again and I could see the concerned look on her face. Very calmly and in a way that suggested I wasn’t concerned, I mentioned it to Dave too. I was trying to prepare and protect them in the best way I could, should it turn out that the tightening in my stomach were contractions.
I wasn’t certain that it was the start of anything. There was always that little ray of hope that I was wrong; there were reasons to cling on to some positives: there wasn’t any pain and I kept telling myself that I’d had the tightening a couple of days before and still there was no baby. So I asked myself why would it be any different now? In fact, I’d been experiencing tightening for weeks. My mind was torn. One half was going down the Braxton Hicks road because of the reasons I’ve mentioned but the other half couldn’t shake off the feeling that something else was happening.
Early in the afternoon I was visited by a doctor. She asked me how I was doing, and, already examining her face for an expression, I told her that I’d been experiencing tightening again. There was a look on her face, where I could tell that for a moment she was considering the possibility of labour. She advised that I should keep an eye on it and that it could be Braxton Hicks. She asked if there was any bleeding and I confirmed that there wasn’t. Once again I brought up the topic of steroids to strengthen the baby’s lungs – a topic that was still playing on my mind. My baby still hadn’t had any. “So you don’t normally give steroids prior to 24 weeks’ gestation?”, I asked. “No.” She said. “At the very earliest, at a push, we’ll give them at 23 weeks plus 6 days gestation, so that if a baby is born at exactly 24 weeks gestation, we’ve given him or her the best chance possible.” I was still only 23 weeks plus 3 days. I still had 3 whole days to go before I could have an early dose of steroids, and you know that type of cry a person makes when they are just completely fed up, frustrated and at their wits’ end? When they’ve hit rock bottom? When their mouth is open wide, not much sound is coming out but the chest and shoulders are jolting vigorously up and down? Well that was me – on the inside. On the outside, I just responded with, “OK.” She left and I lay back down in silence.
The day went on and the tightening came and went; it wasn’t painful at all and I just lay there angry; so frustrated; in my head screaming, “oh just stop. Just stop happening! Please!”
It had got to the late afternoon, possibly early evening, and was very dark outside, when a doctor from the Neo-natal intensive care unit (Nicu) came to see us. I remember sitting up eagerly; surprised; wondering what she’d have to say. We had previously met with Nicu doctors who provided us with a lot of information, such as the survival statistics of 23 weekers and the long list of problems that a 23 week neonate may have to contend with. They had also come back and forth wanting to know if we had made a decision whether to attempt resuscitation at birth, but once they knew our decision and, as a result had their plan of action, we had only been seen by obstetricians.
Granted, it had only been a day since we had seen anyone from the Nicu team but for some reason I was surprised to see her. I can see her standing there now – a pretty lady from Belgium – and little did we know that we’d come to have a lot of involvement with her and grow to like her very much.
She introduced herself and quickly came round to saying, “as this is a much wanted baby and you are almost half way to week 24 and not showing any signs of going into full labour, we’ve decided to give you steroids for the baby’s lungs and magnesium for the brain.”
I looked at Dave and then back at her and frantically reiterated, “so we can have the steroids and magnesium?” “Yes”, she said. Through a giant exhalation of breath, I said, “oh, OK. Good. Great. Thank you!” I had suddenly come back to life again. I didn’t question them about their previous views on the administration of steroids at this gestation; instead, I asked, “So when will I be given them? Will it be soon?” She said, “yes, a prescription is being written up now. You can have them ASAP. You will be given the first steroid injection and the second one will be given 12 hours later. That’s the full course.” She left the room, and I can’t tell you how relieved Dave and I were to receive this news.
It’s funny, we both wanted the steroids and magnesium to be administered; if it benefited the baby in some way then why wouldn’t we? But that was just it – we knew the idea of them was to benefit and strengthen the lungs of an unborn child and to increase its chances of survival but when that child is a 23 week old foetus, you also run the risk of prolonging pain and suffering; something that we did not want to be responsible for. I mean can you imagine being part of the reason behind your own child’s suffering?
In fact, the risk of prolonging pain and suffering was far greater than the likelihood of steroids benefiting a 23 weeker to the point where he or she goes on to survive. I didn’t want to have to demand steroids, but as a mother I still wanted to give my baby every possible chance to succeed. It was the worst kind of “catch 22” situation I’ve ever experienced; and, as a result, up until this point we hadn’t found the voice to demand steroids. Now that we didn’t have to, we certainly weren’t going to question the decision. It was a case of, “give them to me now!” The decision had been made for us and we were beyond relieved. It was written all over our faces.
Looking back, it had been made completely clear to us that if our baby was born at 23 weeks, his or her chances of survival would be incredibly slim, but as a mother you never lose hope; you can’t, not until someone tells you that it’s all over. Until that time you’ll just desperately search for the next glimmer of hope; an open window to escape through; a speck of light; anything; and you’ll pursue it regardless. And you might even truly believe that what you’ve found will do the trick. Until the mental demons come back to torture you. But you’ll find a way to get rid of them again.
She left and I said to Dave, “oh thank God. At least we don’t have to make that decision now. They’ve done it for us. That must mean that they think there’s a slight chance. If the baby does stay in until week 24, at least it’s had all that it can have to assist him or her.”
The look of relief on both our faces was clear. It was one less thing to have to worry about; one less thing to have to think about; to have to agonise over. The decision had been made for us and so we thought that wherever this road takes us, even if it was to hell, not all of the decisions were ours.
Being given this news had given me a boost. I wasn’t quite as withdrawn anymore. So after a while I asked the midwife, “when will I be having the first steroid injection?” It probably hadn’t been that long, but since I had been admitted, I couldn’t shake off the feeling that we were competing against the clock. That is exactly what I had been doing since my admission – willing time to hurry past so I could reach 24 weeks’ gestation, all the while trying to keep my baby inside, when there was no way of actually doing so.
And now that I could have steroids to help mature my baby’s lungs, my sense of urgency accelerated, something I hadn’t thought possible. It would have been Sod’s law to give birth suddenly while somebody’s fumbling around, trying to find the right medication. And I wasn’t having that. My urgency to get what my baby needed was greater than it had ever been, to the point where my panic and frustration was making me itch.
Eventually I was moved to the post natal ward. A new room on a different floor with the bed facing the opposite direction. It didn’t take us long to move; we didn’t have much stuff and I had been wheeled down in the bed. We quickly got settled in. The mild tightening was still present and constantly at the forefront of my mind.
Eventually, the midwife came in with my first steroid injection and I breathed a sigh of relief. She injected it into my thigh or bottom (I can’t recall) but I remember thinking, “right, quickly get to where you need to get to; quickly do what you’ve got to do.” I relaxed a little but the fact that the second dose wouldn’t be administered for another 12 hours bothered me. It made me antsy.
Picking away at me was the fact that the tightening had been present for most of the day, whereas this hadn’t been the case on the day of my admission, just two days before. This was something that I was aware of and something that allowed that defeated feeling to stick around. When I say tightening, I’m not talking about something that was strong enough to stop me in my tracks or have me doubled over in pain; far from it; I’m talking about the mildest form of tightening. But like I said, I’d been having them for weeks. But they were back again and they were occurring closer together this time. I couldn’t help wonder why. You see how my mind and thoughts were split? Optimism versus negativity and fear. It was a balancing act and it was mental torture.
A short while after the steroid injection I needed to use the toilet. And there it was – blood! It was only a small amount but it was back again after two days. Whereas on the day I was admitted there was a small speck, this was a little bit more, and this time it was part of what was clearly the mucus plug. I’d never been pregnant before, and therefore I had never experienced ‘the plug’ but the clue is in the name.
I couldn’t believe this was happening. It was still only 23 weeks plus 3 days! I sat there quietly in the bathroom, behind a closed door, with my head in my hands. Absolutely devastated but still remaining hopeful that I was wrong. Eventually I came out of the bathroom and didn’t say anything. I kept going back and forth to the toilet to see if it was still there.
I must have made the midwife and Dave aware that the tightening was back because shortly after noticing the blood, I asked the midwife, “this may be a ridiculous question but I’m desperate – you know there are drugs that can bring on labour?” “Yes”, she said. “Well is there a drug that can delay labour?” “Yes,” was the response.
She gave me the name of the medication but I don’t remember it. She looked happy that I asked and just like that she eagerly said, “do you want me to go and have some prescribed for you?” “Yes, please”, I said.
As she left the room I remember thinking, “why the hell have I had to ask for these? Why haven’t they been given to me already?”
The only reason I hadn’t asked for them was because I’d assumed if they existed they would have been given to me. Maybe it was because throughout my admission it hadn’t been certain that I was in labour. I don’t know.
She came back in with the medication and advised there were four tablets and that I was to take one every 20 minutes. She came to my room every 20 minutes and handed me a new tablet. I took the first one and, once again, for the umpteenth time during my hospital admission, I felt a sense of relief. I felt as though by racking my brain, by not being willing to give up or to completely lay down in defeat, I had found a new way. I wasn’t going to give up on my baby. It wasn’t over until it was over.
I swallowed that first tablet with purpose. It slipped down my throat and, with gritted teeth and a clenched fist, I thought, “come on! Bloody well work!” I sat back and looked at Dave with a smile; half of me saying, “OK, so that may do it” but the other half of me terrified that it wouldn’t work. The midwife came back in with a second tablet, then a third, and then I asked, “so when do you think these will these start working?” I stopped her in her tracks and she looked at me with a thoroughly disappointed, almost upset, look on her face and said, “if they are going to work, they work immediately.”
My heart sunk. The tightening was still happening. Although I was crushed, I said, “oh ok”, in a way that avoided suggesting panic. I don’t know why I do that. Even at times of crisis, I hate appearing vulnerable. She looked at me and held my gaze, checking if I wanted to add anything further after my question and then said, “OK Nicola, I’ll leave you both alone. I’ll come and check on you but if you want me in the mean time, let me know.”
Time was getting on now and Dave and I were exhausted, so we started to settle down for the night. I laid in the bed and Dave was in the chair to the left of me. He tried so hard to drop off and stay sleeping but every time he did fall asleep, his head would fall forward and he’d wake up. The man was physically, mentally and emotionally drained but even through it all, having to sleep in a small non- reclining chair, just wasn’t working for him, so he decided that the concrete floor was the better option.
He laid there and I was so worried about him. Aside from the obvious fact that he was in hell, just like me, he didn’t give me any added reason to worry. He was so strong, so heroic and inspirational, but I couldn’t settle knowing that the poor man had been through all of this and now he was sleeping on cold, hard, concrete.
While he lay on the floor I continued to go back and forth to the toilet, obsessing about what was going on down below. Bits of the mucus plug continued to appear; and I every time I saw it, it was like a knife through my heart. Fighting back tears in a bathroom when my husband was just meters away was so tough. I can’t remember if I had mentioned what was happening to anyone at this stage, but if I hadn’t that would only have been because I wasn’t able to provide Dave with the news that his world was about to fall apart and I wasn’t willing to accept it myself, because accepting it would mean that I was moving further towards full-labour; and I was still only at 23 weeks plus 3 days’ gestation. And we all know what that means – probable devastation.
Time continued to move on and I lay there awake in bed. It had passed midnight and we had moved into week 23 plus 4 days. This was an added day and changes and progression would have occurred in the foetus, and, of course, this was great, but what wasn’t great was that the tightening I had been experiencing all day, had gotten stronger. Ever so slightly, but still stronger. And what killed me was that I’d not experienced them at this level before. This was a new development.
Again, they were not painful, necessarily, but they had definitely gone into new territory. Now I really knew something was happening. With the exception of the mucus plug, the changes I had experienced previously, allowed me to say to say to myself, “well you’ve had this before and the baby is still inside.” I was always able to justify my fears and reassure myself; even if only a little. But I couldn’t do that now. And so I told myself, “go to sleep Nic. You’ll wake up in the morning and it’ll have been like a bad dream. Sleep it away. You’ll wake and everything will be fine.”
I looked at Dave sleeping on the hard floor with such pity. I wanted to protect him from this. I wasn’t to ready tell him; to wake him up into hell. How could I do that? And so I lay back down with the back of my hand placed on my forehead, the other on my stomach and my chest and shoulders jolting uncontrollably. “Dry crying” I call it. Wanting to cry; sort of crying; your body going through the physical motions; involuntarily using your face as you would when crying, but in the absence of tears. Why was this happening to us?
I felt so sorry for my baby. I thought, “I can’t stop it for you, no matter how hard I’ve tried. I’ve exhausted all the avenues I can think of. I can’t stop you from coming out.” It was so painful to think of the suffering this underdeveloped human being was going to go through; but what was harder was knowing that his or her life would probably only be about suffering, and then come to an end. Then feeling defiant once again, I thought, “no; nope; I’m going to sleep. It’ll be fine in the morning,” and I lay down and closed my eyes.
A little while later at about 4am, and still unable to sleep, “I thought, “what the hell are you doing Nic? If this baby is coming, you need to let them know so that they can be ready. You need to be in the delivery suite and the nicu team need to be aware. I didn’t know how quickly a baby so premature could be born, so the last thing I wanted was for him or her to be born suddenly and precious time being wasted because the medical staff weren’t ready. I had previously been informed that you don’t need to be 10 centimetres dilated when giving birth to a baby this early.
I took a moment; a deep breath; and then leaned over the side of the bed to wake my husband. “Dave?” “Yes”, he said. “I think something is happening.” He quickly woke himself up, sat up and said, “something’s happening?” “Yeah”, I said. He wiped his eyes, got up and said, “OK, I’ll go and get the midwife,” and off he went. He was so strong and so sensible. He held himself so impressively and was so dignified. Throughout this entire journey, one reason that I have been able to call myself fortunate is because I had a husband like Dave by my side.
Dave came back in with the midwife and I explained what I was feeling. He stood by my side looking terrified and a little disorientated. She examined me and said, “OK Nicola, you’re 4cm dilated. I think we need to take you to the delivery suite.”
After only a few hours away from the delivery suite, we were on our way back again.