I said, “never again”, when chatting to another mother inside the NICU (Neonatal Intensive Care Unit) expressing room at the University Hospital of Wales (UHW). “I would never chance going through this again. I couldn’t.” We were talking while expressing milk for our new-borns, who were both receiving intensive care. “Oh no! Don’t say that,” she said. “There’s nothing to say this would happen again.” There was a genuine look of sadness on her face, as if the prospect of my calling it quits at one child would be some sort tragedy. Well, I’m not sure it was my decision to only have one child that she found sorrowful or if her discontent was because the situation I had found myself in had defeated me, to the point where I felt I had to change my future plans of having a second baby: a second baby that I had previously very much hoped to have. Perhaps her sadness was in the knowledge that I’d never experience a full-term pregnancy or deliver a healthy baby in the joyful way women are supposed to or that I’d never experience a start to motherhood in the way I deserved. I don’t know. I didn’t ask. She had four children; twin boys and an older son and daughter. Her twins were born prematurely and were the reason she was at the hospital. I smiled at her to acknowledge what she was saying but in my head I concluded that if I found myself at NICU again, particularly going through the type of journey that I was, then I would most likely have a heart attack or a nervous breakdown.
My daughter Edie was the reason I was at the NICU. She was born extremely prematurely; about as early as you can get wheresurvival is possible. It’s highly unlikely, but possible. She was born at 23 weeks’ gestation. She had been growing well and was healthy in utero and so her arrival was a shock. She came into the world with almost no warning, was born in very poor condition and weighed a tiny 580 grams (1 lb 4 oz.). She was severely bruised at birth; her heart was barely beating, and she was clinging onto life by a thread. Biology says she was not ready for life outside the body. Her birth was traumatic, and my labour was sad. It was sombre and quiet until she was born, and the situation became like a scene from the most dramatic movie. The experience has scarred me for life. Edie was resuscitated at birth by a team of neonatologists and was immediately taken away to the NICU in what seemed like some futuristic glass cocoon (a transport incubator), leaving me and my husband Dave time only for a quick glimpse at our daughter. At one-point Edie must have only been a metre or so away from my bed, but she could barely be seen. She was that small.
At the hospital we were provided with miserably low survival statistics for 23 weekers (babies born at 23 weeks’ gestation) and informed about the very high odds of Edie having a moderate to severe disability if she did survive. We were told that technically she’d be considered a late–term miscarriage if she arrived before 24 weeks’ gestation, but we were given the option of a resuscitation attempt at birth. We were traumatised. Deciding what to do was a difficult decision to make, when knowing that she’d most likely live a short life filled with suffering, but I’ll talk more about this subject in a separate blog.
Our short time at the hospital before Edie’s birth was hell and our first weeks at NICU were worse. Her NICU journey was extreme. It was always going to be, given her gestation. She was a patient for a long time and watching her suffer the way she did was brutal. Day after day we witnessed her hover between life and death, endure countless tests and painful procedures, and all when so tiny – 1lb 4oz. We took part in terrifying conversations with doctors and nurses about the most serious of health issues. Issue after issue, it never stopped. It was relentless. And it went on and on for months. Her care was intensive; she was critical for too long a time; it was torture. For me, the prolonged mental and emotional strain and worry turned into physical distress and I constantly moved back and forth from wondering how long I could continue to take the beating and remain in that environment; to praying for another day, because that meant another day of having her alive. The constant mix of heightened emotions was a lot to take. Imagine that feeling when you’re watching a scary film hidden behind a cushion. That moment when you’re waiting for the killer to strike; that moment where the suspense music is playing but it’s teasing you. Well I endured that moment on a constant loop for months. It’s a lot for the heart, it’s a lot for the mind and it’s a lot for the body.
Edie on life support around 3 weeks old.
At NICU, Edie suffered a bleed on the brain and at 12 weeks of age she underwent an operation on her eyes for retinopathy of prematurity (a condition that if left untreated can result in loss of sight). She weighed just over 3lbs at the time of the operation and she stopped breathing while on the operating table, giving all who were involved in her operation quite a fright and a little bit of a challenge. She battled with a low platelet count and low haemoglobin, pneumonia and multiple other infections. She fought several bouts of sepsis and struggled with chronic lung disease. Her lungs collapsed, she had jaundice and received phototherapy for several weeks. Her skin was so thin and fragile that she required an incubator providing 95% humidity to stop her skin from breaking down and to assist her to maintain an adequatebody temperature. Edie had an open PDA valve (a hole) in her heart, which eventually caused a leaky heart valve, an enlarged left side of the heart and a heart murmur. This required close monitoring as there was a potential risk of heart failure. Her nose began breaking down and the possibility of future plastic surgery was discussed with doctors. The skin on other parts of her body broke down too. She had and still has two haemangiomas (a collection of small blood vessels that form a lump under the skin. They can look like a strawberry and as a result are sometimes called strawberry marks); one on her abdomen and one on her leg. She was on life support (a ventilator) for a month, receiving very high levels of oxygen. To assist Edie off the ventilator she was administered 2 long courses of steroids. For almost 16 weeksEdie required breathing support in various forms: a ventilator, bipap and high flow (nasal canula). She endured the insertion of many different lines and tubes, endless blood tests, gasses and injections and today she wears the scars to show it; particularly on her small heels. I take great pride in her battle scars and I hope that one day she does too. She underwent frequent head, eye, heart and abdomen scans. She’d “forget to breathe” numerous times a day and received different levels of assistance to remind her to do so. She received countless medications and stimulantsto help keep her with us, such as steroids, morphine, caffeine and antibiotics to name a few and she dealt with the unfortunate withdrawal symptoms.
For too long we lived on a minute to minute basis with Edie, and at the 2-week point doctors considered the discontinuation of her care.
This is Edie at two weeks old. This is the photograph of Edie that I hate the most. I find it very difficult to look at because this was her at her sickest. Here she was visibly in distress and all I could do was helplessly look on. Here she was dealing with a brain bleed, pneumonia and we had just found out she had sepsis. She also had a hole in the heart amongst other issues.
After 109 days my husband Dave and I got to take Edie home and have been lucky enough to raise a happy and healthy little girl with no ongoing health issues. Her survival is remarkable but perhaps what is more remarkable is how she has turned out to be; physically and neurologically well, with no ongoing health issues.
Dave and I started our post NICU journey and continue to do so as unscathed as any NICU parents can be. Of course, we’ve had our emotional moments, especially in the early days, and even now something unexpected can bring tears to my eyes. Dave’s too. The more we get to know and love Edie, the more difficult the thought of not having her with us is. Occasionally we talk about what our lives would be like if our NICU outcome had been different; if she hadn’t made it. We wonder what would have become of us. It’s a very strange predicament to be in. It’s like some alternate life; a parallel universe; sliding doors: loving the life you are living while being aware it could have been very different. Don’t misunderstand, it doesn’t hinder us. We havesomehow managed to put it in a box, for the most part, and only revisit that period in a way that makes us appreciate what we have. As I said previously it’s left a scar but when we look back,we are able to marvel at her; at the doctors and nurses; at science and our home away from home – the NICU. When I think about the tough times there, I mostly think of them in a way that sees me in awe of her achievements and of our achievements as a family and I mostly look back thinking about the love we received. I’m grateful to be in this position because I know many parents post NICU don’t find themselves in this mind set. My post NICU mind set is possibly another thing that’s remarkable given what I witnessed there and how incredibly low I was. Edie’s low prospects of survival and the associated statistics were put to us so frankly that it was difficult to have faith, and in those first months we were waiting for her to die. I didn’t see the point of a world where she wasn’t there. If she wasn’t going to be in it then I didn’t want to be either. I was very low.
As inspiring as Edie’s journey is however and as well as we’re all doing now, our decision to have another child was not one that was made lightly. Nor should it have been. To have made the decision lightly would have been foolish and incredibly irresponsible of us. Even if we felt we were able to withstand NICU again, the only consideration we needed to have was forthe child.
After saying “never again”, I found myself curious about having another baby. I had missed out on so much during my pregnancy and my start to motherhood had been so extreme that I found myself melancholy at times. I felt sad about the most peculiar of things. The obvious things too. I never got to pack a hospital bag; I never experienced the third trimester, or got to finish the second trimester for that matter. It pained me that my new born baby was not placed romantically in my arms after birth, that Dave had to look on in horror and not with excitement and that our visitors approached us with tears of sadness and fear in their eyes, instead of joy. They said things like, “Oh Nic, I’m sorry” and “if she’s anything like you, she’ll be a fighter.” Time went by and I couldn’t shake off the feeling that I had been robbed.
Grieving such losses was tough and partly the reason I considered a second pregnancy, but it wasn’t my only reason; it wasn’t the main reason; it wasn’t my biggest reason. I think I may have been able to get over the feeling of loss or maybe not get over it but learn to live with it, but what I couldn’t shake off was the feeling that Edie needed a sibling. You see, I feel that life can be tough; the world can be tough; and I believe we all need a partner. We need that one person that will be on our side. We all need a confidant: a confidant that will defend you against anyone, even when they don’t understand you. We need that person in childhood as we do in adulthood and if you get to have that someone that’s able to journey with you from young to old, well that’s just a beautiful thing. But that’s just me and what I believe. I wanted to give Edie that person that will be there with her all through her life and vice versa. Dave and I are both very close to our siblings. Some of the best memories I have are with my sister. I have wonderful memories of Christmases, birthdays and holidays. We often reminisce about the times we were naughty and of how we used to scheme. We laugh at how we used to physically fight but how no one else could so much as look at one of us the wrong way without the other having a problem with it. I could be with my sister in a room filled with a hundred people and we would be the only two people to find something hysterically funny while everyone else struggles to understand the joke. If someone has annoyed me, I don’t need to go into too much detail about the reason because she will always understand where I’m coming from. She doesn’t try to, she just does. We’re cut from the same cloth. Of course, there’d be no guarantee that Edie would have the kind of relationship with her sibling that I have with mine. It’s possible that they’d grow up, be very different people and live very separate lives with little to no involvement with each other but that’d be up to them. I wanted to give them the choice; the opportunity.
Eventually, I started the ball rolling to arrange a meeting with my consultant to discuss my case and to hopefully find out why Edie arrived early and why things went so horribly wrong. I was advised on several occasions at NICU that such a meeting would be available to me should I want it. Of course, I had more pressing matters to concern myself with at that time, but I never forgot that the “review” was an option. I was extremely curious to know what went wrong and to try and get some closure but I’d be lying if I said my reason for wanting the review wasn’t to also consider or to rule out, if necessary, future plans for baby. I can’t remember if I divulged as much to Dave at this point.
Setting up the meeting at the hospital wasn’t easy, if I’m honest. I made many phone calls, went around in a circle or two and had to repeat myself multiple times. At one point I was passed on to the hospital’s delivery suite and before I could query whether that would be the correct place, or even an appropriate place to go through to, I found myself speaking to a delivery suite midwife.
Everyone I spoke with was polite and understanding of my reasons to want the review. They got it and tried their best to help. I’ll never forget my conversation with the midwife I spoke to on the delivery suite, though, because when speaking with her she assumed that Edie had died. The midwife listened to what I was saying until she thought she’d had enough information to advise me and in a hurried manner she began to read out a phone number. She was obviously very busy. I knew this would be the case and I was embarrassed to have been put through. I began to write down the number but then realised I didn’t know whose number it was. “Sorry, whose number is this?”, I asked. “It’s the number for the bereavement midwife,” she said. “Oh no, no. My daughter didn’t die. She’s alive … and well,” I said. The midwife was mortified and couldn’t be more apologetic. “Oh, I’m so sorry,” she said. “I can’t believe I gave you this number. I thought she had … I’m really sorry.”
I wasn’t upset. I lived through it all and I know first-hand why a person would assume that a 23 weeker didn’t make it. I don’t get upset or sensitive about situations like these. I don’t mind people asking me very real questions about Edie’s journey either. I’m a realist, able to have frank conversations and able to be okay with mistaken assumptions. I appreciated it was a mistake and that she was probably rushed off her feet. That said it could have been quite awkward for both the bereavement midwife and me had I actually spoken with her. It wasn’t a safe assumption to make but in fairness to the midwife, Edie having died was the most likely outcome by far. I eventually got through to my consultant’s secretary who informed me that the consultant was on annual leave and that she’d speak to her once she returned to work. I didn’t begrudge the woman a holiday, but I must confess I was frustrated. All that palaver for her to not be available. I gave the secretary a couple of days to call me back after the doctor’s returnto work and when she didn’t call, I called again. And again. With a nudge the meeting was set up. As the meeting drew nearer my consultant tried to reschedule but I agreed to meet withsomeone else. I didn’t want to wait any longer.
Sat before Dave, Edie and me in October 2017 was the head of obstetrics at the University Hospital Wales (UHW). Edie was 8 months old at this point. We entered a small, light, very warmroom just off the ante-natal clinic at UHW. A clinic full of pregnant women, and one that I didn’t get to attend much (even though I was consultant led) due to my pregnancy being cut so short. I had last attended there less than a year before, but so much had happened since then that it felt like a lifetime had passed. It was odd. It also fed odd to me that the clinic kept moving despite our world having been turned upside down. The same receptionist was there with her head in her work with a smile on her face, the same consultants calling out names and the same bunch of midwives hovering around the table by the blood pressure room. Of course, it would do so, but this strange feelingwas one that visited me often throughout our troubles. At NICU, when in the expressing room and looking through Facebook Ioften thought things like, “why are they laughing in that photo. They are supposed to be our friends. They know what’s happening to us”, and “how can they go out for a meal? They know we’re in turmoil.” I knew and understood the situation of course but the irrational side of my brain often took over; a lot.
The consultant was a lovely lady. She was warm, welcoming and down to earth. She was dressed particularly casually in a t-shirt that she pointed out honoured baby loss awarenessweek. All staff members wore the same t-shirt, and as I often did, I thought about how lucky we were to have Edie with us. I also felt a momentary feeling of dread and sadness, thinking of such babies and their parents. In particular, I felt sadness for the babies that had passed away at NICU while we were there and for their parents that I had gotten to know. I was able to put myself back there visualising the heart wrenching scenes that unfolded before me. Imagining the unimaginable made the hairs on the back of my neck stand up. I didn’t fully know how I felt about the t-shirt being worn in a clinic full of pregnant women. It struck me that perhaps it was a little much, but I also felt it was important to honour such babies. She opened my file and we began.
She was extremely thorough, leaving no stone unturned. She had clearly taken a fair amount of time to review my file. Something I appreciated. This process was quite interesting; finding out many things that occurred within my body that up until this point I knew nothing about. There were moments where I was able to separate myself from being the patient to being someone who takes a keen interest in science. I remember being slightly annoyed with Dave who seemed to be one step ahead of me with his understanding of what she was saying. As a result, he’d finish her sentences. It wasn’t done in a rude fashion and he wasn’t aware he was doing it but him doing so seemed to confirm that no further explanation was required on both our parts and she’d quickly move on. I wasn’t ready to move on. My expression and tone towards Dave told him to stop. I don’t think she noticed but he knows me, and the message was received. I brought things back to where I needed them to be and we moved on at an acceptable pace. I understood that once this was over it was over. It was no good rushing and ending up at home confused about a point and still lacking clarity. I wanted to take my time.
It became clear early in the conversation that she couldn’t give me a definite answer as to why I gave birth so early and I was disappointed. I needed answers. I was aware this was a possibility, but I wanted answers all the same. Without answers how were we supposed to make the decision to extend our family? It was a pretty big decision to make. A wrong decision could have had a tremendously negative impact on our lives. Ithad the potential to ruin it. It then became clear that what was more important in our case was what she was able to tell us.
“I don’t think you have an incompetent cervix”, she said, and the relief oozed out of my pores. An incompetent cervix or cervical insufficiency is one of the main reasons women go into preterm labour, along with infection and placental issues, for example. Before pregnancy a cervix is normally closed and firm, however as pregnancy progresses and a woman prepares to give birth, the cervix gradually softens, decreases in length and opens. An incompetent cervix occurs when the cervical tissue is weak andtherefore opens as a baby grows, resulting in a baby being born too soon. It was incredibly reassuring to hear that she didn’t think there was an issue with my cervix. This was the point that I was most concerned about and most eager to receive clarification on. Having an incompetent cervix was the issue that would be the most likely to encourage me to not have another child. Had I discovered the reason for my preterm labour was an infection, I would have probably considered myself unlucky and trusted that with close monitoring and care it wouldn’t happen again. But an incompetent cervix is a structural problem that would always be there. Doctors sometimes try to remedy the issue by inserting a cervical suture or stitch, but a suture is not guaranteed to work and as with any medical procedure it comes with risk. For me, an incompetent cervix would have made my decision to have another child a more difficult one to make. I remember her saying, “if anything your cervix seems to be quite reactive when looking at how well you dilated and the pace in which your contractions progressed during labour.” I looked at her, then at Dave and then back at her again with my head moving up and down like a nodding dog. “Oh good! That’s good. That really is good.”
Before the consultation, my belief was that the reason for my giving birth prematurely was infection. A couple of days beforemy hospital admission I had a pain in my lower back. AdmittedlyI had never been in labour before, but it didn’t feel like what I imagined labour back ache would be like. It felt as it had done when I’d had past infections. My urine smelled a little off. It had a rubber smell to it, and it lay still in the toilet. It had no fizz to it. She informed us that the two tests taken during my hospital admission, when looking for infection, both came back with negative results. We were made aware of that while I was at hospital. It wasn’t news to us. She admitted this didn’t guarantee there hadn’t been an infection as they can sometimes go undetected, but she wasn’t able to conclude as much because the test results prohibited her from doing so. At the delivery my placenta was sent away to the lab for testing. It was literally sliced and diced. It too didn’t show any signs of infection, but ithad been bleeding. There had been a significant amount of haemorrhaging, but they didn’t know why. The doctor said what they had found throughout my placenta was usually consistent with what occurs in a first trimester miscarriage or a chromosomal abnormality, both of which had not occurred in our case. It was puzzling to her and she, nor the scientists, were able to say for sure why the bleeding had occurred. She thought the most likely reason for the bleeding was because my cervix had been open for quite some time, possibly causing damage to the placenta. She also thought the early delivery of the placenta could have caused it. I vividly remember her saying, “in obstetrics there’s more that we don’t know than what we do know.” I appreciated her honesty. She continued through a check list of tests results, observations and other possibilities, for the purpose of ruling things out. She observed information regarding my placenta, blood results and scans. I struggle to remember what all of them were, and I didn’t fully understand all of it at the time, but I was confident she knew what she needed to rule out and that she had done just that. She told us that they ruled out a certain type of cancer and I felt a little funny about that. This possibility hadn’t occurred to me and it hit me from left field. To think that I was going about my daily business on a certain day, completely oblivious that someone somewhere in a lab was checking that I didn’t have cancer was unsettling; it was weird.
We talked about how some women find carrying a child incredibly hard and she asked if I struggled and was unwell during the pregnancy. I informed her that I did; that I was. She didn’t commit to this at this point, but it was as if she had concluded in her mind that I didn’t have an incompetent cervix, I didn’t have an infection but that my body struggled to do the whole pregnancy thing, probably on the basis of my slight build. Growing a human is a big task after all, and perhaps she concluded that my body wasn’t built for it. During the pregnancy I lost weight and was very pale; almost yellow. I had issues with my thyroid function, I was very low in energy and my rheumatoid disease was quite active. I “just wasn’t right”, as my mother says. Whilst 8 out of 10 women find that their rheumatoid disease has gone into remission during pregnancy, I was one of those in the minority with an active disease.
During my pregnancy with Edie I thought I was one of those women who didn’t sail through pregnancy. I was aware that some do, and some don’t. I just assumed that I was one of those unhappy pregnant women that didn’t bloom. Never having been pregnant before I had nothing to compare it to and I assumed that how I felt was the same way other women who didn’t enjoy pregnancy felt. It’s only through hindsight and a second pregnancy that I realise just how unwell I was. The consultant pointed out that growing a human is a big deal; it’s hard. I responded to say that I know lots of smaller women who have sailed through pregnancy. She agreed that she did too. She said, “while some small framed women find it easy, others don’t.” She pointed out that pregnancy can be harder when you have little resources to rely on, and it’s even harder when your body is battling with multiple chronic conditions, such as mine.
I have pernicious anaemia, rheumatoid arthritis, psoriatic arthritis and hypothyroidism. She mentioned that while my BMI is in the normal range, it’s at the lowest point of normal at 20.5. Right when I thought, “okay, I’m naturally this way, it’s how I’ve always been, so this’ll always be a problem for me”, she continued, “but should you want to do this again, we can keep an eye on you, keep you healthy and assist you to full term if necessary now that we know you may struggle”. I felt relief to hear her say that. She said that even though Dave and I had gone through this awful situation, there was nothing to say this would happen again but not leaving things to chance, I would have a very watchful eye on me, and now that they know what happened with Edie, all the care I needed would be there to try and prevent a repeat of my premature delivery. She said this with confidence and even if I didn’t trust my own interpretation, with my heart longing for another baby, I knew I could trust Dave’s judgmentbecause even though Dave would have liked another child, I don’t think the longing was there for Dave in the same way it was for me, so I knew I could trust him not to be blinded by his desire.
Me in November 2016 when pregnant with Edie. This picture may not mean much to you if you don’t know me but here I’m extremely unwell. Pale, having lost weight, a “funny colour” and with deep sunken eyes. Here I was attending a family meal. It took all my energy to go and so making an effort to look nice was too big an ask. I was around 14 weeks pregnant and already feeling the strain.
To check my understanding of what we’d just been told, and without asking the consultant outright to repeat what had been said, I started to talk about what happened to us, to explain what we went through, so that she absolutely understood what we needed to know; and the conversation between parents and doctor took a natural turn on a human level. She really was lovely, praising us for getting through it in one piece and staying strong for Edie. She made a comment that to this day makes me smile; it was a very doctor thing to say. “I don’t see many 23 weekers” she said, “and the ones I do see (pointing at Edie) are not like that. She’s obviously made of very strong material…. well done.” Very. Strong. Material. I guess we are made of materialaren’t we? And yes: if anyone is made of strong material, then it’s Edie.
A very healthy Edie around the time of our review with the head of obstetrics at the University Hospital Wales. October 2017.
It makes me smile when people praise me for the way I grew Edie inside the womb. I mean, it’s not like we have a choice about how it’s done, do we? Well apart from neglecting ourselves in favour of our babies of course but I thank people for the praise all the same. It’s kind. I will say this though, I feel like carrying Edie almost did me some damage. She was a taker. For the 23 weeks she was inside she thrived, and I wilted. I’m glad she did; no, I’m grateful, because I know for sure it stood her in such good stead. It gave her the best weapons possible in her almost impossible fight. It enabled her to be David against Goliath. Dave and I left our meeting feeling optimistic. It gave us something to think about. We carried on with our life for a little while, though,before the topic of baby number two surfaced again.
Very strong material.