(Written 3 days following her loss, published at 1 week)
I suppose the true beginning of my story is back in a consultant's office in January 2005; I was 20 years old, in my final year at university, and just diagnosed with insulin dependent (type 1) diabetes. Lots of things must have been said at that appointment, but the thing that stuck with me was when the consultant advised me "don't worry - this shouldn't affect your ability to have children”.
I'd always imagined I'd have children at some point in the nebulous future, but aged 20 with dreams of adventure and a successful career, and being in a fairly recent relationship, it seemed a distant future, however that was the moment that I realised how desperately important it was to me to have children one day.
Six years later that boyfriend and I became husband and wife; another few months on and after only three months of trying we had the news that we were pregnant. I was cautious, knowing the complications that could be caused by diabetes; I took folic acid, managed my blood sugars, attended all the clinic appointments, and eventually rejoiced in the smooth progress of my pregnancy. I would have been induced, but my waters went the day I was due to attend for a sweep; labour progressed in a text book fashion, I managed with just gas and air and our perfect baby girl was delivered on 1st July 2011. She was, and remains, perfect. I cherished every exhausting milestone, and cried with relief and happiness that I felt so lucky to have her.
After our daughter turned two we decided to try for our second. After six months of trying without success my routine diabetic blood tests showed that I now also had an under-active thyroid; I was started on medication, and advised to stop trying until my thyroid levels were stable. I thought that I was mourning a loss then.
After another two weeks I had to check my diary ... surely not ... yes! I was pregnant! Again we tried to be cautious, but everything seemed fine. I had an early viability scan at 7 weeks, and there it was, a little heart beat in exactly the right place. 12 weeks; low risk blood results and scan looked perfect. 20 weeks; growth and development looked perfect, I even had an extra, specialist fetal heart scan which had not been offered when I was expecting my daughter, but was now routine for all diabetic patients; again they confirmed that his heart was perfect. His: we were having a boy! Of course we would have been equally ecstatic to have another daughter, but a boy - the first on either side of our family for 25 years - was so exciting. We passed the lauded 24 weeks 'viability stage'; honestly, we thought we were home and dry.
I put our daughter to bed on the evening of her third birthday; she kissed the baby brother bump, and asked if he was kicking. No, I realised, actually I hadn't noticed him moving all day. I didn't feel him moving overnight, and the next day was sufficiently concerned to call into the Maternity Assessment Unit at the hospital - reassuring myself that it was better to appear paranoid about nothing, than to ignore something potentially serious. The MAU found his heartbeat, but offered a reassurance scan if I hadn't felt him move by the end of the day. I didn't, so the scan was arranged for two days later. On the Friday morning we went for the scan; it was mostly fine - he had changed position and was now head down with his feet cushioned by my anterior placenta, so this was probably why I couldn't feel movement any more. The sonographer however was mildly concerned about a 'bright bowel' so she made a referral for a further specialist scan at another hospital on Tuesday 9th July.
We were so sufficiently reassured by the Friday scan that my husband almost didn't come to the Tuesday one, just a short bus ride away from both of our places of work. I left my office with a cheery 'see you in a couple of hours', and didn't even turn my computer off. With hindsight I should have realised that something was wrong by the way the midwife behind the receptionist said 'we're expecting you' and ushered me through, for a scan conducted by the consultant. Almost immediately the consultant pronounced that our baby boy was 'very unwell' and needed treatment. She suspected anaemia, causing a build up of fluid inside our baby boy's body - 'hydrops'. She suspected the cause to be the parvo virus, commonly known as slapped cheek, although we cannot account for any exposure to this virus.
Seven hours later I was flat on my back, trying not to move and gritting my teeth as the consultant inserted a needle through my abdomen, and into my uterus, in order to perform an 'intrauterine fetal blood transfusion'. My husband was at my side, and he counted a total of 10 medical staff in the room, including 'the professor' - head of the department. They confirmed anaemia, and the that the transfusion was successful and the anaemia had been treated. We left that evening, slightly bruised, but incredibly grateful for the medical expertise and technology that had treated our baby boy, who we were assured would start to show signs of improvement quickly, and would hopefully be well again in a week.
The next day I was convinced that he was moving more, naturally we took this as a good sign. Over night I didn't feel movement, so in the morning, just to be cautious, we popped back to our local hospital. It was then that we were given the devastating news that our baby boy's heart had stopped beating.
How we have got through the days since then I really don't know. We had to tell our family; who all immediately dropped what they were doing and rushed to be by our sides. Including my little sister; 22 weeks pregnant with her first to my 27 weeks with my second - but what kind of example was I setting here; when we embraced in tears over our bumps, inside my bump my baby boy had died.
The induction started just after 10am on Saturday morning. At first I occupied myself by knitting a blanket, we listened to music, and even laughed along to comedy on 'netflix'. The evening wore on and my sister brought in a coloured lamp from home, so that we would't have to have the harsh strip lamp on, plus left over takeaway for my husband, who ate in spurts whilst my sister took over supporting me through worsening labour pains. As the pains worsened I couldn't complete the blanket; my mum sat outside in the family room and completed the final few rows for me, when the blanket was done, she and my sister left us to it, as we wished.
I struggled with the pain; I was moaning in pain through contractions, and in between wailing with the emotional pain of knowing that there was to be no happy ending. The anaesthetist was called, I didn't have to worry about whether the drugs would cause the baby to be drowsy on delivery, he was already gone, but the anaesthetist didn't make it.
Our baby boy, Benjamin Alexander, was delivered at 9.55pm on Saturday 12th July 2014. He weighed 1.25kg and was 39cm long. He had a perfect button nose and rosebud lips just like his sister. He was dark haired whereas she is strawberry blonde. She was a perfectly average 3.5kg and cried as newborns should. He was also perfect, just small, and very still.
I don't really know how to process the events of the last week. I have moments of composure when I can think clearly and rationally, and there are moments when the the overwhelming devastation takes over my body like a contraction and my whole being shakes with sobbing. Yesterday the after pains physically hurt, today the after pains have lessened, causing a different kind of hurt as without a baby to hold and nurse, even just the pains and the bleeding feels like a connection to my baby boy that will soon be gone.
I am grateful for many things that are not making my pain any worse; that I did not ignore my own concerns but went to the hospital; that we had the opportunity to have the blood transfusion that could have saved my baby boy; that the cause of his death appears to be completely unrelated to my own medical conditions; and that we had a couple of days notice before he was stillborn, which at least helped us prepare; and that we have our wonderful daughter and the support of our family and friends. These things cannot take away or even lessen my pain and grief, but at least they are not reasons to feel worse.
Right now, having sat up late and written down my story I am having a composed and rational moment; I think these moments come when I am working towards some objective that is related to Benjamin. But soon there won't be anything else left to do, apart from get on with grieving, but somehow still continuing to live.
I know I'll have to get there someday. One day in the future there is no reason why we can't have another one or even two more babies - a wonderful option to have that I know simply isn't available to others in this situation. However for now I need to grieve, and I need to grieve hard, for my baby boy who will always not be here.
