I don’t know where to begin my story because I don’t know where my story rightly begins. I do know where it ends, though - with me cradling a dead baby. My dead baby, who had a few hours before been safe and protected inside of me, a picture of health and robustness.
Somewhere on or around Wednesday 23rd November 2011 I went into premature labour, though I didn’t know it at the time. The day began as one so ordinary that I cannot remember a single thing I did that day, although I have trawled my brain trying to piece it together. I’d worked an extra shift the night before for someone who was sick. I work in a boarding school and sleep overnight there. I left work at 9am on the Wednesday and needed to be back there for another shift at 3pm. I had made plans to go for breakfast with one of my ex-students that I keep in contact with, but she had to cancel so I think I just chilled out at home. As I said, I’ve no idea what I did but it wasn’t anything out of the ordinary. I probably read a book and mucked around on the internet. I may have had a nap. At any rate, I must have been feeling fine and normal as I headed off to work as usual with no hint of what was to come.
I’d been experiencing some lower back pain for a couple of weeks. I’d read that this is really common during pregnancy, and as my tummy had just started to pop out and get bigger, I figured it was messing up my posture and putting strain on an old injury I had in the same area. I saw an osteopath and she suggested the same thing. I’d also seen my GP two days beforehand because I suspected I had a urinary tract infection or something like that. She tested my urine and it came back negative so she said it was probably just uncomfortableness from increasing pressure on the organs in that region. She is an extremely competent and thorough GP and I had no reason to doubt her advice. I still don’t have a reason to doubt her, but after my baby died I found out that one of the common causes of premature labour is an untreated infection that crosses the placental barrier. Should I have forced her to test for more things? Should she have told me that infections can cause premature labour? Probably. But perhaps it would have made no difference.
The reason I include all this information is to explain why when during my shift that Wednesday night my lower back and abdominal pain began making me a bit more uncomfortable than usual I didn’t think much of it. Actually, I thought that I was just being a sook and better harden up to endure the rest of the pregnancy as I got bigger and more uncomfortable. I don’t know exactly when it started. I sent a text message to Leslie at 4.44pm telling him that it was going to be an easy night of work as only 13 out of 50 students would be in. At 6.39 pm I sent him another: ‘I have some bad lower abdomen and back pain but only one heat pack! If these are those ‘practice contractions’ then I’m going to need narcotics much sooner than anticipated when the real ones hit…’ He wrote back ‘Maybe we need to get you some now?’ and I replied ‘I’m in a significant amount of discomfort so yes please. I don’t know what it is’.
Jokes aside, it still did not cross my mind that anything serious could be wrong. Throughout the night my colleague and I watched TV (yes, I have a pretty good job!), chatted about her upcoming wedding and my plans for the baby, and she kindly re-heated my heat pack at various intervals and gave it to me whilst I lay on the couch. At some point I found two panadeine tablets in the sick bay and took those, which seemed to take the edge off the pain enough that it didn’t keep we awake during the night or get any worse.
By morning, though, the pain must have ramped up a few degrees as I remember sitting at the desk and wishing 9am would come so that another staff member would come to relieve me. I still ate breakfast and got dressed and woke the girls up without any dramas, though. I sent another text message to Leslie at 8.29am that said ‘Can you please have a hot water bottle ready for me when I get home. I have so much pain that I’m thinking of calling the hospital’. He was working from home that day and called me straight away to suggest I go to the hospital to be checked out. I really just wanted to get home to my bed but he insisted despite me thinking that I was making a mountain out of a molehill and probably about to waste our whole day waiting in an emergency room.
I rang the hospital and explained my symptoms and they told me to come right in to get checked. Leslie said he would meet me there. So I drove myself across town to the hospital. The pain kept coming in waves and once it had subsided I kept thinking that I’d imagined it was ever there at all. At times during the drive I even kept wishing for it to come back so that I would feel justified in going to seek medical advice! It was my lucky day, I thought, as I got a car park right outside the hospital - virtually unheard of!
I presented to Emergency and on repeating my story was taken to the triage cubicle where a midwife saw me straight away, asked me lots of questions, took my blood pressure etc. and felt my tummy for evidence of it contracting. It wasn’t, and I wasn’t in any pain at that time so I felt quite stupid, especially as all the other ladies waiting outside glared at me after I was seen so quickly! The midwife told me she wanted to send me up to the maternity wards to get a proper look over and she insisted I go in a wheel chair. ‘I can walk’, I told her, but she said gently ‘well, let’s just take the pressure off your body in case you are contracting’. I was sure this was all for nothing, so was wheeled up to the second floor feeling very conspicuous and somewhat like a fraud who was wasting the time of very important and busy people.
I was put in a single room where a midwife entered all of my history and symptoms (I still don’t know why my history was not in their system as I’d attended all my antenatal check ups there). She also felt my tummy and said she could not feel any evidence of it tightening which was a good thing. She mentioned something called round ligament pains and that it was probably just my muscles stretching to accommodate my growing baby. She made me feel better by telling me that lots of first time expectant mothers come to the hospital with random pains and that they understand it is an anxious time and do not mind. She asked me to tell her when the pains came and left and I did not realise at the time this meant she was timing the contractions. How stupid was I? Well, I feel pretty stupid in retrospect that despite all this I still did not realise what might be happening to me. She listened to Max’s little heartbeat and it sounded good and strong so awaited in blissful ignorance for the doctor to assess me before (I thought) telling me to go home and put my feet up.
A handsome young Irish doctor came to see me and asked me to again tell him what had been going on. He explained there were lots of causes for abdominal and back pain in pregnancy and most of the time it was nothing at all. ‘Just to do the right thing by you, as you’ve felt worried enough to come in here, we’ll do an internal examination just to be thorough,’ he said. I had the impression that neither he nor the midwife expected there to be any problems so I somewhat reluctantly agreed just to get the peace of mind.
After he’d finished the examination, which he managed with a poker fact, he sat down again and didn’t say anything straight away. I assumed he was just a gentle doctor who wanted to take his time. What he said next was completely unexpected and hit me like a tonne of bricks as I had not added up any of the signs in my own head. He said ‘I’m so sorry Janelle but it looks like your cervix is opening up - it’s 4cm dilated - and I can see the membranes bursting through’.
I don’t remember what happened next. I remember shaking a lot and looking at Leslie, both of us still puzzled about what this meant. Very soon a head obstetrician was called for who came in and explained the situation in more detail to us. She was also a lovely Irish doctor. Again, I don’t remember exactly what she said, but it wasn’t all doom and gloom at this stage. She said that this happens to a lot of women and that quite often they can get the contractions to slow down or stop. All I understood at this point was that I would not be leaving the hospital any time soon, and wondered what I was going to do to keep myself occupied for the next few weeks. I assumed it would be weeks because they arranged a parking permit for Leslie that lasted at least two weeks. It seems to stupid in retrospect but I really thought in doing so it meant that I was safe for at least this amount of time.
I think I realised at this stage that I was likely to have a premature baby, but I did not comprehend the danger I was in. Leslie’s sister had her baby at 27 weeks, and whilst they had a hard time for quite a few months, little Oscar thrived and was sent home a healthy little boy close to his actual due date. As far as I was concerned this was the worst that could happen.
They moved me to a birth suite which had a special bed where they could turn me on my left side and elevate my legs higher than my head. They left me there for the afternoon and I felt it very silly that I was not even allowed up to go to the toilet. For the first time in my life I had to use a bed pan and I felt so embarrassed and humiliated, especially when I missed it the first time and peed all over myself and the bed. I did not have a change of clothes with me so had to finally get into a hospital gown. The afternoon passed quickly. I do not really know what Leslie and I talked about for the most part. We certainly did not feel overly alarmed or panicked or distressed. Everyone had given us enough hope that the very worst case scenario would not eventuate that day at least.
To prepare us for what might happen, they sent a paediatric consultant to talk to us about what happens to babies that are born at 23 weeks, 24 weeks or 25 weeks. She presented us with an overwhelming array of statistics that dealt with both survival rates and rates of signifiant disabilities that occur at each gestation. It was hard to take it all in. She explained to us that 23 weeks was what they call the ‘threshold of viability’. This means that babies born this early are on the cusp of being able to survive outside the womb but that their prognosis is still very grim. There are cases where babies have survived, but they mostly ended up with major disabilities and little if any quality of life. She quite frankly told us that they do not recommend resuscitation to babies at 23 weeks but they will offer it if parents advocate strongly for it.
Both mine and Leslie’s gut reaction was that we would not want our baby to suffer so many painful interventions if it was unlikely he would survive them. We were strangely pragmatic about it. Both of us had agreed previously, I think, that we would want to be let go peacefully if there came a time that we were damaged or injured beyond repair. I think our reaction came from this place. However it was complicated in that this was our reaction when we did not think it could possibly happen to our baby. We felt it was the right thing to let such a baby go, but did not comprehend that the decision we were making was for our baby, not some unknown baby or someone else’s baby, or a hypothetical baby. Though I suspect we would have stayed with our decision regardless, I have since thought the doctor should have done more to bring this fact home to us. She told us that if the contractions stopped, we should be prepared to make the decision again at 24 weeks or 25 weeks as the circumstances change quite dramatically in a very short space of time. At 26 weeks, for example, they will resuscitate your baby whether you want them to or not. But even at 24 or 25 weeks the prognosis is a whole world better than it would be at just a week earlier. She left us with some information to consider but we didn’t even look at it. We either thought we had plenty of time to talk about it, or else we knew in our hearts that our baby was coming that day and the decision would be taken out of our hands.
By the end of the afternoon I was experiencing more pain. The nurses gave me some panadeine forte to take the edge off. It made me sleepy. I managed to get in contact with my dearest friend, Kate, to tell her what was happening and I also contacted my mum who was understandably worried and upset. Kate and her husband Mark came into visit me and we had a relatively normal conversation and a few laughs. They left after about an hour with promises to talk the next day.
It soon became clear, however, that Max was going to be born that night. My contractions got a lot stronger and closer together all of a sudden. I went from being quite relaxed to quite agitated when the pain kept coming. They sent the obstetrician to see me again and she agreed that it looked likely I would have a baby soon, though she dearly hoped I would not. They had given me a drug called Nifedipine which is a calcium channel blocker which is usually given to people with high blood pressure. It is known to stop contractions in some cases. It did not work in mine. My body, despite my innermost prayers and wishes, continued to prepare itself to give birth and there was nothing I could do but watch helplessly as I neared closer to the point of no return. Leslie asked if it was OK for him to leave and go home to feed Pepper and grab a few of our things. They said he should definitely stay put so this is when we knew for sure that there was no going back.
Instead, Leslie rang Kate to come back in and pick up the keys to go to our house. She came and did so, and in the meantime the obstetrician came in to say the focus was now on preventing me experiencing pain or trauma so they gave me some shots of pethidine, and after things had progressed even further they sent an anaesthetist to hook me up to a morphine drip that I could administer myself. Though I don’t think it did a lot to take away the pain of later labour, it did give me something to focus on with every contraction. I pressed that button with all my might!
When Kate arrived back at the hospital to give us the keys labour was in full swing and I am so grateful that both Leslie and the midwives asked her if she would be willing to stay and support me through what was going to be a very traumatic time. To her credit, Kate did not hesitate to say yes and she was soon sitting beside me. She tells me that I spoke to her and made a few jokes but I have no memory of any of it, only glimpses. I remember at one stage yelling out ‘fuck!’ and her saying ‘come on, you can do better than that, you say worse than that over breakfast on a Saturday!’. I also remember telling her I was glad I’d shaved my legs and my bikini line the day before! For most of the labour I did not want anyone to talk to me or touch me. I spent the whole time with my arms covering my eyes as even the dull lights were too much for me. When the pain became too much i would grip the bed and turn away from everyone.
I remember becoming very upset and distressed when my waters broke. Not only did the sensation frighten me as more kept pouring out every time I had a contraction, but I think it was the moment I realised that this was really going to happen. That my baby was going to come out.
I was supported the whole way through this experience by a young midwife called Tamara. She was only in her second year of the job, but was such a calming and reassuring influence. I kept telling her how scared I was and she helped by calmly explaining to me what was happening, or what was about to happen, how the next part would feel, etc. I remember asking her if it was finished yet, when will it finish? And she told me that it would soon - that soon I would feel an intense sense of pressure and have to push my baby out into the world. Sure enough, this happened exactly as she’d described it so I knew exactly what was happening. It was the strangest and most intense sensation that I can’t even begin to describe. My body started pushing and I had no control over it whatsoever. I could not have stopped it if I tried. Throughout this whole time I could not shake the feeling that I was a mere observer of what was happening to me, not an active participant. It’s an experience I’ve never had before.
Suddenly, there he was. My perfect baby boy in my arms. He was born at 11.17pm. He was so still but this did not distress me. It felt like he was meant to be that way - peacefully sleeping. I did not do any of the things I would have expected I would do: scream at someone to save him, collapse on the floor in shock, try to resuscitate him myself. I just held him calmly and lovingly, in absolute awe at this little creature. I think I was overwhelmed and scared of him a little though as I soon gave him to Leslie to hold, but kept my hand cradling his little head and stroking his face. I did not know if my son was dead or alive. I knew that he was not breathing but his heart was still beating. What did this mean? Tamara told me that it was like being in a coma and that technically speaking he was still alive. His little heart beat for over 5 hours, which was very unexpected, and which just shows was a strong little boy he was. He died in his daddy’s arms, having known only love and affection in his short yet significant life.
We held him for many hours after he died and never left him alone for a second. I managed to have a shower and we had some lovely photos taken by the midwives, and then in the morning by a professional photographer at the hospital. I am filled with regret that I did not stay longer in the hospital with Max. We left around midday. I wanted desperately to get home out of that god forsaken place, and in retrospect I think I was afraid of Max disintegrating before my eyes. I wish I’d been able to articulate this fear at the time. I had never seen a dead body before, least of all a child’s, and I was worried that he would go stiff or start decomposing or something. I’m not sure exactly what concerned me, but I wish I had asked someone about this and felt more confident to spend as much time with him as I needed. Each night when I go to bed I am filled with regret that I could have had more time with him, taken more pictures, if only I’d known what I know now.
There is no way to explain what it is like to leave your baby in the hospital, never to see him again. I did not want them to put him in the morgue and still have horrible visions of what such a place looks and feels like. I did not have a change of clothes so I had to leave the hospital in one of their dressing gowns, walking out in the corridors along which other women were giving birth to healthy babies. Everyone who saw me must have turned away or stared at me in horror, knowing that something awful had happened. Or maybe they had no idea, like the guy in the carpark or cracked it and starting beeping the horn when we did not get in the car and leave fast enough for him to take our spot. I was devastated when this happened. I realised that to the outside world this was just an ordinary day and that no one had any idea of the immensity of the tragedy that had just befallen us. This was brought home to us again when we arrived at home to find that a brand new cot and mattress we’d ordered had been delivered that very day. What a cruel irony. I’d been hassling the company for weeks when it hadn’t arrived and here it was on the day the baby it was intended for died.
We showered and I immediately threw everything out of the bedroom. I had this strong need for everything to be clean and simple. Despite giving birth only a few hours earlier, I was changing the sheets, cleaning the bedside tables and putting clothes away before I would let myself sink into bed and sob and rest. We spent the afternoon in each other’s arms, in between making funeral arrangements and contacting people to tell them what had happened. Both my GP and psychiatrist had been informed of what had happened and both encouraged me to take some valium and get some sleep. The next morning would be the first of many that I would awaken sobbing when as soon as my eyes opened I had to remember all over again that my baby was gone. I cannot help but feel I will awaken with this sorrow all the remaining days of my life.
I'm here from Sally's place - Tuesday's Hope. I lost one of my twins to premature labour at 23 weeks and my heart just ached for you as I read this post. So much of your story is familiar to me, the back ache that started as nothing and just got worse and a situation that just got more serious and serious. It's an impossible position to be in, that tipping point of viability. Being outside of my own body, being an observer.
ReplyDeleteI also had a strange sense of peace while my daughter was dying. Surrounded by the people who loved her most. I hope that they felt our love around them.
I wish I could go back in time and punch that guy in the car park for you. If only he'd known.
And most of all I'm just so sorry for the loss of your son, your dear Maxwell. So loved and cherished.
Dear Catherine, I have just finished reading your entire blog, start to finish. I hung off your every word. I want to ask you a thousand, billion, questions.
DeleteWhat a familiar story yours was, as you say, but how unfamiliar too. Your Jessica brings a unique perspective to the story of premature birth and terms like 'viability'. They say that a 23 weeker can't survive with any quality of life, and yet some do. Some just do. She is living proof of that. I can't quite accept, or get my head around who decides which babies will live and which will die, but then I still can't accept that a 23 week old baby - perfectly formed and in perfect health - can just be born for no reason, and with no warning, either, so, I guess I have a long way to go in the 'acceptance' stakes.
Thank you for your kind words about my little Max. I am so glad to have found you, and to have been able to share in your story, too. I hope to continue reading about your journey.
Oh Ms J. My heart goes out to babies born at 23 weeks, like my daughters, and their families. But I know that Jessica's is an unusual outcome and one that I hope did not bring you pain to read about. As you know, having read stories like Vicki Forman's and Alexia's, extremely premature birth can result in complicated outcomes. It truly is an agonising stage.
ReplyDeleteIt is just so unpredictable. My two girls could not have been more similar, genetically, physically, they were twins after all, but the outcomes could not have been more different. Georgina struggled from the very beginning and she died after receiving medical interventions that, sometimes, I wish I could have spared her from. Jessica will be turning four and she is in very good health with very few developmental problems. It's a mystery I'll be thinking on for many years to come.
I still can't quite believe that my babies were born, suddenly, for no reason that anyone can seem to fully pin down. And I have had a lot longer to advance myself in the 'acceptance' stakes than you have. I had, at least, the advance warning of a risk factor in multiple births and a slightly dodgy ultrasound of Georgina's heart. But it was all so NORMAL. NORMAL damnit. Still hurts, that everything looked so good but, somehow, wasn't. It's the perfectly formed, in perfect health, that sometimes makes the tips of my fingers burn. So, so close. So close, it feels as though I should have been able to catch them. Buy them an extra day or an extra week. That might change the outcome.
Your Max is so beautiful. I'm just so deeply sorry. I wish that nobody had to go through this experience.
Catherine, I was amazed to read of Jessica's story - truly amazed. The only thing that upset me is the fear that I did the wrong thing by agreeing for Max to be provided with palliative care instead of active intervention. Could he have been the one in a million like your Jessica? Did I deny him that chance? I don't know how to resolve those questions. Everyone agreed we were doing the right thing, and it felt like the right thing at the time, but the doubts creep in sometimes, as I'm sure you know. Being asked to make decisions like that under the most agonising, unimaginable shock and pressure is, well, unimaginable. . . how we made any decisions at all I really don't know. It's all a blur.
DeleteI remember the neonatologist inferring to us that while we had a decision to make, it was not a 'real' decision at all. It seemed like it was not a decision about whether Max would live or die, but instead how he would die - hooked up to a ventilator or peacefully in our arms. They were not willing to resuscitate unless we actively demanded it, as everyone agreed the outcome, even if Max had lived, would likely have not been a good one - we got pages and pages of information about the likely disabilities he would suffer. But then, that's all statistics isn't it? No one really knows. I'm sure you had the same information given to you with your girls, and then against all of the odds, Jessica showed them all. You must just marvel at her - how can she be? Where has she been? What does she know?
23 weeks is agonising because every single day counts. The doctors were hopeful they could stop my contractions, even if only briefly, as even 2 or 3 days extra would mean the outcome could be vastly different. Sometimes I just sit here and think why THAT day. I mean, WHY, out of any day it had to be, that exact day? One week later and the whole story would have changed.
I'm right there with you that it's excruciating to try to come to terms with the fact that everything was perfect and normal - my baby would otherwise have been a perfect newborn, had my body not so cruelly let him down. I had no advance warning, and none of the risk factors. It's unfathomable. . .
I can't imagine what extra layers of confusion and disbelief, and god knows what else, come with having two babies, each with the exact same potential, but only one who would be OK. You have my absolute admiration for the way you seem to have managed this cruel divide - it's like something out of an ancient folk tale in its contrasts - the light and the dark, the living and the dead, the hope and the despair.
You have been in my thoughts constantly as I have turned and turned your story around in my mind. Thinking of you and both of your special 23 weekers. xx