PDA

On the subject of challenge, as my last post was titled, this has been a very frustrating week. Finn, normally a very happy baby, was beside himself on Friday evening and was inconsolable at bed time and then on Saturday he woke up full of cold. One year on from hospitalisation and a minor summer cold can still knock him sideways. Everybody who meets Finn always comments on two things, 1. how bright and happy he is and 2. how small he is. We have real struggles with weight gain- Finn is only just on the very bottom line of the 0.4th centile on the Boys UK-WHO growth chart so despite being 13 months corrected and developing normally, he still wears size 3-6 month clothes and they’re not tight. I have found it difficult with the comments and questions I am continually faced with, from strangers, about his size. Whenever asked how old Finn is I have always felt the need to justify why he’s so tiny and found myself going into the full story of explaining everything as I feel their questions concerning prematurity are an inevitability. These days I don’t bother, I tell them his age and I stop- I don’t have to make excuses for him, in fact I feel overwhelmingly lucky that we have come all of this way and that our only real issue is that he’s tiny, that said, the day to day reality of it frequently gets me down.

In addition to some food aversion (very common with ex-prem babies) Finn has a cow’s milk protein allergy, he is also allergic to egg, soya and avocado (nightmare) and he has always projectile vomited numerous times a day since the day he was discharged last June. I told every single health professional that I saw in every check up throughout the last year but it took until this June for Finn to finally undergo an allergy test. A cow’s milk protein allergy means that Finn has been allergic to the baby formula he’s been given every single day since he first came home. He was fed expressed breast milk from birth until July where he was then prescribed a high energy cow’s milk formula to help him gain weight and promote ‘catch up’ growth. You can, I am sure, imagine our dismay, then, on finding out he has been allergic, all this time, to the very thing that is supposed to have been helping him and we feel we have long been on a path, always one step forwards two steps back. Feeding, therefore has always been our issue. Finn will not accept anything off a spoon, he will not take Calpol, he will not take vitamins…I gaze in wonder across coffee shops at mothers feeding their babies an Ella’s Kitchen pouch from a plastic weaning spoon as, like little birds, they open their mouths in excited anticipation at the arrival of every morsel. I have never been able to do this with Finn, nor do I have the luxury or convenience of ever having been able to give him any form of shop bought baby food as we have to optimise Finn’s calorie intake with every meal, every snack, every drop of milk. He is, now we know about his allergies, prescribed a hydrolised, high energy formula- that is, a cow’s milk based formula where the proteins have been broken down so that his body doesn’t recognise them as an allergen. Standard over the counter baby formula is 65kcal per 100ml and Finn’s formula is 100kcal per 100ml so it is almost double the energy density. Once we changed Finn’s milk and removed the other allergens from his diet, as if by magic, the vomits stopped! I cannot begin to explain the relief but also the intensely high levels of stress, anger and disbelief when this happened. How, in my mentioning of vomits to so many different health professionals, was a cow’s milk protein allergy (or any allergy for that matter) not investigated in a baby who is so small that he now falls into the category of Failure to Thrive. It was only on my going to the GP (who plays an entirely insignificant role in post-discharge care) and requesting an allergy test because of a small rash that appeared on Finn’s face that a referral was finally made only for the next available appointment to be an approximate 6 month wait. It shows, to be honest, how pivotal you are as a mother in your child’s care in the power you have to influence medical management; if I had not firmly requested an allergy test, he would never have been tested despite him being extremely closely monitored by various paediatric specialists. All the while, Finn’s learned association with food throughout the past year has always been that it causes him discomfort. He struggles to gain weight, so on seeing a dietician, of course the advice is to make his food high calorie. How do you do that? You add cheese to it, cream, give him yoghurt, give him avocado- meanwhile, unbeknown to us, he was therefore having a reaction to virtually every meal he was eating as well as his daily milk feeds.

I write this now as it is only in the last few weeks that things have settled down, we have removed the key allergens from his diet, he has been well the past month and his eating, although still poor, is gradually improving and so we see little wins. Recently his vomits are few and far between but as it does not happen as often any more, it is even more distressing when it does! We know each vomit means a lost meal and therefore minimal calories ingested. It is quite simple: if you want to lose weight, you need to consume fewer calories than your energy requirements. If you need to gain then it’s the opposite- but how do you get a baby to gain weight and grow (no matter how high calorie a meal you have lovingly and obsessively prepared) if he just can’t keep it down? When Finn has a cold, probably because of his past lung issues, it goes straight onto his chest, then he has a lasting cough. He seems to have always had a very strong gag reflex and, perhaps, a weak esophageal sphincter. The cough causes him to gag, if it occurs while he’s eating, every single time, the entire meal will come straight back up, all the while the measly 100 grams he may have gained last month to keep him, by the skin of his teeth, tracking that very bottom centile line has already been lost and he’s back to weighing less than he did a month ago. It is absolutely soul destroying. As a mother, nothing makes you feel more satisfied than being able to feed your child wholesome, good quality food and have them enjoy it. How then, do you cope when your child won’t eat, or when they do, however small the amount, it’s all brought back up at every meal time as he vomits? He’s distressed, he’s covered from head to toe, the family meal is ruined, he needs a bath and then all you can think to yourself in the clean up process, obsessing in your panic, is what else can I give him? This is what we’re currently going through and it’s far from the first time and I find it very hard in these moments to stay positive, so while he’s napping, I thought I’d write it down because what else can I do except wake up tomorrow and try all over again?

I want to go back now to my previous post about the challenge of extubation. After, I think, three failed attempts at extubating Finn, when he turned 9 days old on 21st February a heart murmur was detected.

On the 22nd a PDA was confirmed, but at least his feeds went up to 7ml two hourly and both eyes opened for the first time- such is the dichotomy in the day to day life of a premature baby! Patent ductus arteriosus (PDA) is a condition where the ductus arteriosus fails to close after birth which causes left-to-right shunting within the heart from the aorta to the pulmonary artery causing flooding of the pulmonary vessels and therefore difficulty breathing and poor weight gain for the baby. This increases the risk of intraventricular hemorrhage (IVH), bronchopulmonary dysplasia, congestive heart failure, and necrotizing enterocolitis (which, sadly, I’ve mentioned). The PDA explained why we had such an awful time watching our child being resuscitated- as the tube was removed, he plummeted further and further into a state of almost devastating exhaustion with the huge effort and energy requirement of being tiny and breathing for himself anyway let alone the added, serious complication, of a PDA.

This diagnosis resulted in Finn having daily echocardiograms to monitor the blood flow in his heart and eventually the UCLH neonatologists requested the Great Ormond Street Hospital (GOSH) team to visit and perform an echo themselves to decide upon, if any, the interventional strategy we needed to take. For some, a PDA will prevent a baby being able to breathe for themselves, for others, they may manage and then the PDA may spontaneously close as it should have done- stimulated by the increased oxygen from a baby breathing for oneself. Sometimes, however, surgical intervention is necessary. So on day 10, we were left with the possibility edging in of our less than 1kg baby being transferred to GOSH for heart surgery, because without it he would not be able to make further progress. Every day, it seemed like either nothing happened, or there was the dramatic possibility of something dire happening. It actually worked out that on a shift change, another doctor decided to give Finn one last chance at extubation before the final decision was made to transfer him for surgery- this time, he made it off the ventilator! I vividly remember going into the nursery as the extubation had taken place in the early hours of the morning and the tube was not in his mouth, instead, Finn was on CPAP. Unfortunately CPAP, as a machine, looks rather more invasive and actually hides more of your baby’s face but it was huge progress. Continuous positive airway pressure (CPAP) is a form of lesser ventilator, which applies mild air pressure on a continuous basis to keep the airways open in those who are able to breathe spontaneously on their own. I also remember a journal entry shortly after the successful extubation where I had written that it had been 36 hours off the ventilator and the doctors were positive and felt that perhaps the surgery wasn’t going to be necessary after all. It was a small win, but as far as breathing was concerned, Finn still had a way to go and the PDA was still there, threateningly in the background. Something you can do is administer paracetamol or ibuprofen to babies with a PDA but that carries its own risks and contraindications.

The problem is, medically, the more you intervene, the more problems that may develop due to side effects and contraindications- the sicker your baby the higher their medical interventional requirements, the more significant and extensive the contraindications and so you’re left with a mess of a puzzle to figure out and a lot, sadly, comes down to luck. We won this particular battle though, and Finn in breathing terms actually did very well for a 24 weeker. Many premature babies go home on oxygen, Finn did not require any breathing support or oxygen after the age of around 35 weeks gestation, although he was ventilated for surgeries, and required oxygen in recovery and when other things sadly happened to him as he became very sick. After coming home last June, Finn had a ‘fit to fly’ test at Great Ormond Street hospital in the September, he failed it and then it was repeated this past January and he passed, enabling us to go on our first holiday abroad in the spring. The oxygen percentage that we breath in air is 21%, whilst flying that oxygen reduces to 16% which means those with difficulty breathing, or a history of lung disease or other respiratory illnesses are unable to fly, or able to fly but only with an oxygen tank. The requirement is that the oxygen saturation in your blood stream must remain in the high 90s (out of 100)  in order for you to be able to sufficiently breath with reduced oxygen. A desaturation is when your body fails to maintain sufficient saturation and as the body tries to compensate you take faster, shallower breaths  to replenish the depleting supply. Desaturation is obviously serious, especially when it falls really low as this means that your body, your organs, your brain are not receiving sufficient oxygen. When Finn was struggling off the ventilator in the story that I have told, I remember his saturation levels dropping to 40 and his heart rate was not far from it. He failed his first ‘fit to fly’ test and the lowest his saturation dropped to was 87- to give some context to the severity of sats dropping and staying as low as they did that day, even if it was for a short time. So gradually, over time, you can see that the body is remarkable, and things begin to normalise. Finn was born with underdeveloped lungs, he had a haemodynamically significant PDA, he couldn’t make it off the ventilator and then he did, and then his PDA closed and by a year old he was on his first holiday, abroad, in Dubai. Time is a healer, both medically and emotionally- it’s important to remember that.

 

Challenge

For the first few days in the NICU I felt comfort and safety in the knowledge that little happened, but upon reflection I realise I didn’t really understand much of what was actually going on. It was naive of me to expect that a baby born, by the Tommy’s definition, ‘extremely preterm’ would have a smooth admission ride with no issues even if that was what I desperately hoped for. I felt that, since he had survived the birth, that was it, he’d made it and now we could watch and wait. An agonising wait it seemed, to get to the point when you felt out of danger, an agonising wait for the something bad to happen. Continually you searched for a conversation with a doctor where they might give you an encouraging smile and assure you that they were not experiencing any problems, but in your desperation you forgot that it was already a problem that he had been born at 24 weeks and there was no possible way any doctor could give you any assurances. Before each post I write I put together relevant sections of Finn’s various discharge summaries and the journal I kept in the first few weeks of his life. When Finn was born, understandably nobody knew how to respond- do you buy a ‘congratulations’, ‘yay’ ‘new baby’ card for a baby the parents might lose? Do you buy a Jellycat bunny or a baby grow or a blanket, or a Diptique candle to offer a tranquil accompaniment to the grieving process, or their rare moments of rest? Or do you, sadly, do nothing? A very dear friend bought me a journal, to write down the daily events, our thoughts and feelings and it was the best idea because it kept me focused- channelling my thoughts through words on a page it gave me something to do every day and something that in the future, like now, I would be able to look back on and read with a renewed mindset and sense of clarity.

Each day the Consultant in charge and his or her entourage performed a ward round. That is, the entire team would visit the cot side of each baby, review and discuss their ongoing care and make a plan for the day. This became our routine, every morning we arrived in time for the ward round having already been to see Finn and scrupulously read every note on his chart. We questioned, and probed, listened and nodded and clung to every word before resuming our day- hands through incubator windows, reading children’s stories, trips three hourly to the expressing room.

To facilitate healthy growth, the job of the team after birth is to challenge your baby. One of the biggest challenges that the team and your baby faces is to breath on one’s own. This process is called extubation (removing the tube), that is, getting your child off the ventilator. You are in a window of comfort with the reliance upon the ventilator, you see your baby’s chest rising and falling and it gives you a warm feeling of normality, the numbers on the screen tell you his sats are good and his resp. rate is normal. But his sats are artificially maintained and the resp. rate isn’t his- it’s the machine. The doctors attempted and failed to extubate Finn 3 times in the first few days of life. I was consoled by the Consultant with the statement it is very difficult to extubate a baby weighing less than a kilo, but the experiences were horrifically upsetting. You wish nothing more than for the extubation to be successful, for you to see your baby’s face without a tube down their throat or up their nose, the removal of each piece of equipment being a step towards normal, the replacement of one thing with another less invasive- progress.

I remember very vividly one specific attempt, a fantastic doctor at UCLH made the decision to extubate, we stood watching as Finn’s sat levels, heart, and respiratory rate started, slowly, to drop, his little abdomen inflating and falling like a weak thin-skinned balloon, his ribs all too visible beneath the surface. She used her index finger to administer chest compressions, the nurse, standing beside her asked with a detectable hint of panic, ‘Do we need more people?’ before pulling the emergency cord for the tube to be put back in place. Failure. Naturally, I was rather hysterical at this point- watching your baby fading before you, desperately but hopelessly clinging onto life was not what I would choose to happen. The doctor who attempted the extubation asked me very directly- what exactly I was upset about? It might sound abrupt and perhaps cold of her but the intention behind it was warm and the conversation that followed actually kickstarted the mindset I would be forced to adopt moving forwards. I told her it was the not knowing, the complete helplessness. She told me that I would have to find the strength to put those feelings to the side because it was impossible to predict an outcome but you have to know what you should and shouldn’t get upset about because what had just happened in that room, it was not bad.  Aside from the obvious, bad would be discovering your baby had had a catastrophic brain bleed, bad would be severe sepsis, bad would be never getting off the ventilator, spending years in hospital and then perhaps, maybe, going home with a child with a tracheotomy. All were possible. She said that so far Finn had done very well, his cranial ultrasounds (brain scans) were normal (although he could still develop a bleed), he was not off the ventilator but then he still weighed far less than 1 kilo…but what we had to hope he did not get, was NEC. Necrotising Enterocolitis is the baby killer.  Quite simply, it is a severe, often fatal infection where the intestines start, inexplicably, to die. Finn got it. This was not, however, until much later when he was around 6 or 7 weeks old so we will get to that. So what the doctor meant was, Finn had many, many challenges to overcome and he was all alone in facing them. I couldn’t collapse into myself, in a pit of despair and hopelessness, we had to just be there, and watch and keep on moving, because whatever was happening for us, it was far, far worse for Finn.

On days less dramatic, to put into perspective how painstakingly slow each day could be, and how delicate these tiny babies are, it was a big deal for us at 2 weeks old for Finn’s feeds to have increased from 1ml- yes 1ml of breast milk through his tube every 4 hours, to 4ml every 2 hours to help him gain weight. It wasn’t until Finn was stable enough at 7 days old that I was finally able to hold him. Skin to skin (Kangaroo Care) is a huge part of preterm care and its benefits are amazing; helping a baby to regulate their body temperature, nurturing the bond between mother and baby, stimulating milk production, pain and stress relief, transfer of good bacteria, improvement in heart and lung function and regulation of blood sugar. It is an amazing experience, it took 4 nurses to manage safely to lift Finn from the incubator, along with all of his equipment and tubes and place him against my chest and then cover him in multiple blankets before keeping an eye on the equipment to ensure he remained stable. Once I held Finn, to maximise the benefits of skin to skin and minimise disruption I would hold him for 2 to 3 hours at a time, simply lay back, with him on my chest- I was elated at the time, sadly though, I could not feel the weight of him against me, only the pressure of the tubing that seemed to just hold him together- skin as fragile as gossamer, skull soft and malleable, his breath not even a whisper.

 

Patient B

I couldn’t see him. That’s what jumps out the most in my memory of the first moment I walked into Nursery 1 of Intensive Care at University College Hospital. My eyes flicked frantically between the four incubators in the room, each visually holding a baby except Cot 3, Finn’s cot- I couldn’t see him. I couldn’t see him because he was not what I expected to see, no matter how much I had read in the short days on the labour ward on what to expect. He was so, so small that the wires, the tags, the leads, the ventilator, the fabric covering his eyes obscured almost every part of him. I couldn’t see my baby. His skin was dark brown, translucent. He was covered in the most aggressive dark purple bruising from the trauma of the transverse positioning of his delivery. He was skin and bone, not a baby but a foetus. It probably sounds quite shocking for me to say that, but our first moment of seeing our child was so clinical, not the emotional, desperately happy feeling of having your curled up pink newborn passed into your arms, a full head of hair and his Dad’s nose. You are presented with a mouse-like, half formed, miniature idea of a baby full of so much promise to become the former but with so far to go for it to be realised. The volume of equipment was the most daunting realisation of how we may never get there, the sheer number of beeps and alarms. I don’t know what I really felt, numb I think, I was so in shock I remember I think I walked into the NICU barefoot from my room in the Labour Ward across the hall and I was asked by a nurse to put some shoes on, I could hardly cope with dressing myself let alone formulate an emotional response to a baby that of course I loved unconditionally, but in a way I couldn’t quite feel yet because he was there, but unresponsive, not breathing for himself, eyes still fused closed.

And so ‘What now?’ we asked as the nurses explained the rules of the nursery, the meticulous cleanliness, the visiting hours, the phone number so that we could call to see how he was when we went home each night, painfully,  without him. Finn was ventilated, he was on antibiotics, he’d had a cranial ultrasound to check for brain bleeds, he had cannulas, an Umbilical Arterial Catheter (I’ll refer to a form of one of these in future as a ‘long line’) so that they had another point of access and a way that he could be fed intravenously (yes that’s a thing). He was undergoing phototherapy for bruising and jaundice so his eyes were covered to protect them from the light. The Incubator was closed and set at 100% humidity for the purpose of thermoregulation, fluid and electrolyte management as well as maintaining the integrity of the skin (which, of course, is an organ) still yet not fully formed. He had TC rings stuck to his legs to measure the CO2 percentage in his blood stream and therefore, along with blood gases, help accurately calculate his oxygen requirement to maintain his saturation level. We had no idea of course, at the time, what any of this was or what any of it meant but it became our every day, managing life support, mitigating risk, waiting for him to grow. There was a duality to the sound of the constant beeping of the equipment. On the one hand you were familiar with its sound but a change in pitch or tone or frequency and your stomach tensed once more as the nurses flitted between machines with an uncomfortable casualness- it was their daily routine.

There was a long time when in the gravity of what has happened to us I felt anger in every day even long after Finn came home, but I am starting to feel at peace with what has happened, and take pleasure now, in the everyday, in the ordinary. Ordinariness is a luxury you never realise you have until you’re firmly thrust into the opposite and as Finn turned one corrected last Sunday, he is so happy, so full of energy, thriving, I feel that I am starting to enjoy life again. It’s important to admit to my anger,  I feel, not that I would put myself necessarily in the bracket of having suffered from postnatal depression, but certainly, quite possibly from post-traumatic stress. You see Finn’s ‘NICU journey’ as they call it was not one of the longest but it was, in contrast, one of the most dramatic. To talk timescales, having a baby as early as almost physically possible we were told that term is approximately when most babies tend to go home. Obviously the earlier the baby the further away from term, the longer your hospital stay. For a 24 weeker, if they go home at all, it is far less likely to happen at term because the earlier a baby is born, the higher the risk of complications and sickness. What I didn’t understand at the time was that having a timescale in mind, was both pointless and cruel. With a premature baby you can’t fixate on a home date, you can’t think about the future at all because every day you go into that hospital, you don’t know whether your baby will make it the next few hours, the next few days, because they are so frail, so vulnerable, that their condition can change dramatically in no time at all. I wasn’t angry that it happened to us and not somebody else, there are many far far worse off, but the anger lies, I realise now, in the complete powerlessness. You have no choice but to be strong, to face what is in front of you that day and make decisions to move forward, and wait- read a bed time story through the incubator so that he can hear a familiar voice, cup his miniature body in the palms of your hands through two perspex doors.

It’s not right that days after giving birth, I’d leave our little sanctuary of a garden flat, walk up Hampstead High Street (past a thousand mums and babies), take the lift down and ride those few stops on the Northern Line to Warren Street. I remember sitting opposite a lady who was pregnant, or looking at the sign to give up one’s seat for pregnant ladies or those less able to stand, and having a sudden gut wrenching reminder – I was no longer carrying our baby, I no longer qualified. Worse still was not only the knowledge of my empty womb, my still-raw stitches, the stark normality of a journey on the tube, my engorged breasts (heavy with milk coming in) but my sickeningly empty flat. The complete lack of anything in our home for our child, no sign that we had even had a baby. We had not even got to the point of ordering a Moses basket, or decorating the nursery or discussing names for that fact… and so every lonely evening when we came home together, we came home, together as two, just the same as before, except not the same, a huge gulf lay in the very absence of what should be there with us.

“You got wires, goin’ in
You got wires, comin’ out of your skin
You got tears
Making tracks
I got tears
That are scared of the facts.”  

Athlete  ‘Wires’ 2005

Patient A

I have had this post open in ‘drafts’ for a number of days- the beginning of Finn’s hospital journey and I realised it was also the end of mine.  I want to tell his story chronologically, factually but without the intention of terrifying others. I want you to hold onto the knowledge that there are positive outcomes, even when times are so dark they seem impossible. For me, this still touches a nerve when I attempt to explain it and I think perhaps even more so now, because in those first days, in reality, I was clueless. I have been very lucky that up until Finn’s birth I had never spent any time in hospital, nor had any of my family or friends been in hospital for anything too serious or for any length of time and so I had no first or even second or third hand experience of hospital life. The daily routines, pharmaceuticals, staff change over, food, opening hours, visiting hours, hand washing, bed space, it was all brand new! After Finn was born and then revived on the resuscitare, he was taken directly to the NICU where we were then unable to see him for a number of hours. Interestingly, and I guess quite obviously, at that moment Finn and I became separate patients: I, Patient A on the Labour Ward- at this point to now be treated as a postnatal mother, and Finn, Patient B, on the NICU.  I was moved for bed space on the Labour Ward into a room (or cupboard) further down the corridor with no windows within about 30 minutes, Finn was born at 00:30 after which I think I managed to grab about two hours sleep out of pure exhaustion in my new cupboard before 06:00 came and a nurse told us that Finn had been stabilised and that we were allowed to see him. In addition, though, I was also now being moved up to the Postnatal Ward where they wanted to keep me for an additional night, so, she asked, ‘Could I please gather my bags?’.

I will come to the part of seeing Finn for the first time but I do feel it is of great importance to talk of my experience as Patient A. I was, understandably, not in the right frame of mind, nor was it my priority to contest my room changes x3 in the space of less than eight hours. Being a first time mother, and therefore naive in relation to the aforementioned hospital routines, I was not aware that I, being completely well, was able to discharge myself to focus on Finn. There was absolutely no reason I needed to stay an additional night in hospital; I required no medication except perhaps over-the-counter pain relief, I personally suffered no complications, and with Finn being on the NICU the only time I would need to spend on the ward would be to sleep. Let me tell you, it is quite simply brutal to put a new mother, following a traumatic birth, separated from her critically ill baby (who may never make it), onto an open ward of women and their crying, healthy bundles for the night to ‘sleep’ and recuperate!

I lay in that bed, with my hands over my ears separated only by a curtain from the five other women and their babies surrounding me. I had not cried until this point for the purpose of self-preservation and to try my hardest to be in the right frame of mind to make decisions with the doctors over Finn’s care. I wept, uncontrollably, like a small child struggling to take inward breath. As all of the mothers around me cooed and fussed over their newborns, their partners whispering encouragement, nurses and midwifes popping in to offer support in the darkness, I realised with full force the lack of a bassinet in my own bay. I stayed, my knees tucked up to my chin, behind my curtain- not once did a midwife visit me. Sore and exhausted, I left the bay and hobbled toward the nurses station in the vain hope of a paracetamol, too shocked and exhausted to appreciate the fact that it was quite possibly the cruellest thing I would ever have to endure, and that I had a choice- I didn’t have to be there, to be subjected to that.

To make matters worse, I begged the next morning, to leave, in tears I explained to the midwife on duty that I had not been visited by anybody for pain relief or indeed to check on my emotional state, I also made a point of mentioning that it was not remotely sensitive of the hospital to place me on an open ward full of mothers and their healthy babies. It took another three hours before the discharge papers were processed. I sat in a sterile waiting room on a cold leather sofa while a midwife and, looking back now I assume a student, came to speak to me about my leaving hospital. I am so angry as I think back to this and have to write my next sentence. The pair of them then proceeded to tell me the safety measures of caring for a newborn baby. They asked me if I knew how I should bath a baby. They told me where to hold him, to support his head, how to test the temperature of the water…how to put him to sleep in his cot- to make sure I positioned him so that his feet were at the bottom of the cot so that he couldn’t wriggle beneath the blankets… I sat staring, exasperated, shocked- dismayed at the ignorance! To tell a woman, visually distraught, her notes in your hand, how to care for a healthy newborn when (if at all), it is going to be a very, very long time before she ever gets to take a baby home…I can’t even begin to comment. You might think that somebody would have realised that perhaps it was not the right time to have that particular conversation. It was so by the book, so impersonal, so shockingly ignorant to attempt that dialogue that it broke me. Up until that night in the Postnatal Ward, I had held it together, I had stayed strong, I had with resolution and determination, visited my baby, my thin frail foetus of a newborn and spoken with the doctors about his progress and potential fate, but that conversation with the two midwives who discharged me and the night I endured on that ward I will remember for the rest of my life. I walked with my husband out of the doors of the Elizabeth Garratt Anderson Wing to a fierce blast of freezing February air. My poor father, desperate in his grief, tried to help me into the car, Danny carrying the bags behind me. I was numb.

This is in no way a diatribe on the NHS, but it was an unfortunate, and at the time, devastating oversight on the part of whomever was responsible for moving me along that night, or a fault of the system in general. My care, antenatally on the Labour Ward was exemplary, but this has stuck out to me as a very serious aspect of postnatal care that needs to be addressed- the care of women after birth who are exceptionally vulnerable following either still birth or any birth resulting in the separation of the mother from their newborn child.

Should you ever need to raise concerns with the NHS department or hospital where you have received treatment, every hospital has a PALS office where you may submit complaints, observations or indeed commendations. Let us not forget that this is one unfortunate example, one that I have articulated with the view to raising awareness around preterm care for not just babies but also their mothers. Finn, in contrast, was a recipient of the exceptional.

Transverse

As I sit typing on this rainy May afternoon, Finn’s vest is coffee stained from throwing his arm into my already cold Cappucino, the dog howls along to the repetitive jingle of VTech’s version of “Old Macdonald had a farm” and I’ve thrice had to sprint the length of the bedroom to wrestle my miniature escape artist from attempting to crawl off the top step of the stairs. This, you see, is why this is not a forum through which I seek sympathy, you may read things you find confusing, disgusting, hard-hitting and quite frankly devastating but how lucky am I, despite everything, to have had the morning I just described?

The title of this post is Transverse. For the squeamish, yes, this is a birth story! Once it was clear the baby was not going to shimmy back up the birth canal, the Consultant Obstetricians and the Consultant Neonatologists, in their ways, debated the pros and cons of a C-Section from the point of view of the mother and the point of view of the baby respectively- I was left to decide. “The baby is too small, you may end up requiring a hysterectomy” said the Obstetrician. Twenty-six, first baby, hysterectomy and still birth are not what one ideally should ever have to hear in a single conversation. “A caesarian will give the baby the best chance of survival” said one doctor, “the head is already passing through the cervix” said another.

A vaginal delivery it was, because to call it natural really points out its unfairness.

What I remember really vividly is that despite being given a stack of Tommy’s and Bliss leaflets telling me everything to expect about having an early baby, advice on dealing with bereavement, a list of everything that may very possibly be wrong with my child, there was not one singular moment where I acknowledged that it would happen. In those hours I was my only ally, I could cry and accept my fate, mourn the almost inevitable loss of my first unborn child or I could cling to positivity because that was all I had- I had to align myself with a mindset.

As the Obstetrics team sympathetically offered me an epidural to make it as pain free and calm as possible, I knew they were preparing me for the worst. ‘Will it make the baby any more docile?’ I asked, ‘Potentially, yes’ was the response. So I knew then that I had to do everything I could to give him the best chance! In some sort of determined denial, I gritted my teeth, I breathed, I got on my knees and I pushed with all of my might. Shocked by the speed of it I fought the spasm-inducing oxytocin, the bile rising in my throat, the acidic burning that was Magnesium Sulfate traveling intravenously up my right arm into my chest, my neck, across my face and in some delirious exhausted state with no pain relief I pushed, at times without contractions, until my baby was born. Transverse- yes, sideways, that is: right arm, episiotomy, head, body, blue, floppy, no respiratory effort, no detectable heart rate and placed in a plastic bag onto the resuscitare.

I’d do it all again in a heartbeat.

Women in preterm labour are given steroids to help mature the unborn baby’s lungs and this can reduce the risk of dying by 40%. Magnesium Sulfate, which is a terrifyingly painful drug, is delivered in two doses intravenously for a time slowing down contractions, its administration also reduces the risk of Cerebral Palsy for babies born too early. If you’re wondering, or are confused about my mention of oxytocin, oxytocin is actually a hormone naturally produced by the body to start contractions and a drug form is used to induce labour.  Odd then isn’t it, that I was given it? Once it becomes clear that the baby is better off out than in, so to speak, oxytocin is administered to speed up the labour, causing painful, strong and very frequent contractions. So painful and frequent in fact that having already been contracting regularly for two days with virtually no sleep and having to use a bedpan for a week as the doctors were doing everything they could to keep Finn in,  the administering of oxytocin meant that Finn was born within two hours, and as you’ve read, quite dramatically.

You might also be interested to know that up until the day that Finn was delivered, my waters still hadn’t broken. Some preterm babies are actually born in the waters intact. The sheer force of the contractions sped up artificially through hormones caused my waters to burst at the pushing stage, followed then by a placental abruption which meant Finn was not receiving oxygen via the umbilical cord and the delivery room on the labour ward suddenly filled with what felt like one hundred people in a state of emergency. My mum, I think, was screaming and that’s why I was forced to push without contractions; the longer Finn was deprived of oxygen, the more likely… well the rest hardly needs to be said.

Truly though, despite all of this, facing labour with all of the heartbreaking possibilities that could have been our outcome. Danny and I were the perfect team! He was an unwavering motivator: hopeful, encouraging, excited and then ecstatic at the knowledge of hearing we had a little boy for the first time! He never once showed me he was scared. And the pain? I joke sometimes that I only had to push out half a baby, weighing less than 2lbs- he was minute but being transverse, the pain at the final hurdle is just indescribable. I do know though that I got into a rhythm, you can work through contractions, you can find a way to cope because once it’s all over all you really need is a strong sugary cup of tea and a good night’s sleep and at the end of it, regardless of the outcome, you know you have tried your very best for you and your baby, and that, quite simply, is the only power you have.

The Beginning

I pondered with the view of starting this post with the statistical chance that I had of going into ‘spontaneous preterm labour’ but then I have just returned from Finn’s 1 year corrected development check and I have been firmly shunted into the realisation that it’s not the statistics that matter but on which side of them you fall.

I do know that 1 in 9 babies in the UK are born early; it is less likely to happen at the point of viability (you’ll notice that the UK abortion limit is 24 weeks gestation where it is believed that a foetus becomes viable, that is, able to potentially survive outside the womb); less likely to happen to healthy young Caucasian women; but to be young, white, middle class, healthy and to go into labour at 23 weeks the night before one’s wedding is virtually unheard of.

Survival rates of 23 weekers are also sickeningly low at approximately 15%. Of those 15% who survive the birth itself, many die soon after or may have life long significant health problems: lung disease, poor hearing, blindness, neurological or developmental disorders, Cerebral Palsy.. the list is endless. And so part of writing this blog is not to terrorise with a fact list about that which awaits if you go into early labour, but to educate, offer some comfort to those who might be going through something similar, or have had in the past. Writing it down is something that I have thought about for a while, but feeling that I have for the past year, been living in a state of, I suppose, trauma, I have not felt able until now, to open the laptop and start.

I remember being desperate to seek some support from anybody who had the slightest inclination of what I was going through, desperate to read success stories about terribly sick babies now bouncy toddlers with a medical history as long as their arms but a future unaffected. I craved this but also feared typing #23weeker, #24weeker, #premature, #preemie (a word which for some reason I hate) into Instagram for fear of what I might see that I didn’t want to. So I hope that, whomever this reaches it might give just something, words from somebody through the other side, that I so desperately needed, myself, to read.

Prematurity is a subject about which most know very little. Before it happened to me, I remember knowing that babies were born early, that they had to go into incubators until they were big enough to go home- but that was the extent of it. But if you think about the reality of an early birth, a birth as early as mine for instance, my baby, Finn, missed the entire third trimester. Luckily (if that’s the right word) after a ‘spontaneous maternal PV bleed’ (as I have read so many times about myself in Finn’s medical notes) which caused my going into preterm labour at 23 weeks gestation, I was bluelighted to UCLH London, put on bed rest, tipped backwards almost upside down to counter gravity and given a cocktail of drugs to prevent my labour progressing, Finn was born at 24 weeks and 6 days gestation weighing 730g or 1lb 10oz. This extra week gave Finn an additional 9.5% chance of survival. Little did I know, surviving the birth was just a tiny part of it, for all of us.