October is an important month for a number of reasons, most notably Pink October for breast cancer awareness. But, what fewer people know is that October is also Infant Loss Awareness month which is why I’ve asked Amber to share her story with you.
Despite all of our advances in health care there are still a shocking number of families who suffer with this loss and most of them suffer in silence because talking about it makes the world uncomfortable but with fifteen babies dying every day in the UK from stillbirth, during labour or within four weeks of being born surely it’s something we should be talking about.
It’s time to break the silence and give those families the opportunity to get the support they need and deserve which is why, on the 15th October 2017 at 7pm in every timezone the world will see The Wave of Light as everyone affected by the loss of a child lights a candle in their honour and keeps it burning for an hour.
In honour of this month of remembrance, awareness and support I have asked Amber to share her personal story about Mylo with you.
This year I joined an exclusive club that I would have never wished to join. The most painful thing is the feeling of utter emptiness inside. I am of course trying to express the void that comes with losing a baby. The nursery is a ghost room that I have left entombed; no courage to step inside and look at the sanctuary we created in times of joy. The door is shut to me, to the world. The tiny clothes folded up as unfulfilled in their role as me.
The little countdowns now seem so futile and are now days of sadness. We passed what would have been my Baby Shower. The next milestone will be my due date, 12th October. This date falls within Baby Loss Awareness week (9th-15th October) and will be a sobering reminder of what myself and far too many other families experience every day. My story I am sure is a shared story. We lament the passing of our children that were lost too soon; never had the opportunity to be held in our arms in life.
My days are up and down. I will admit that I was one of those people who threw myself into activities to keep my mind from overthinking. I looked at how precious time is and found a new journey to embark on as a Mother who had lost that identity (I didn’t know where I was grouped anymore. I felt very redundant). I also filled my time with telling my story, speaking my sons name and fundraising for an amazing piece of medical equipment for my local hospital that allowed myself and my Husband and family to spend precious time with Mylo.
My journey to the point of pregnancy was tumulus from the start. I sat in the GP’s office last September, finally having the medical diagnosis of Polycystic Ovaries Syndrome that I had known was the case for ten whole years. I had been made to feel as if I was a complete hypochondriac, so when the GP delivered the words “it will be difficult to have a child” it was not only a terrific blow but vindicated all the times I had felt like I was made to feel like an annoyance. I was not self-diagnosing. You are very much aware of your own body; acutely conscious of all its little nuances and idiosyncrasies, and sadly this is one of the most heart-breaking lessons I have learned from my journey of loss: Trust your own body. You know deep down when something is not right.
I refused to be told that the chances of having a family were any lesser than other couples. I had already put any plans for children on hold but secretly was working to one last timescale – “I would like to have a child before the age of 28.” My husband already had to wait for me to finish my university education…. then wait for me to try and find a “decent” job. He is one of the most proficient carers (having brought up a troop of younger brothers and sisters and his niece) and being a father has been a long standing goal. Oddly, I had managed to convince myself that I would not be a “perfect Mother” whatever that even means. I had given myself “baby fright” over the years! I used to avoid holding any of my relative or friends very young babies; convinced that I did not have the ability to keep a tiny human being safe. It isn’t the fact that I am not maternal at all (videos of babies laughing on Youtube had always made me come across giddy and my ovaries metaphorically tingle), but presuming that I would not have the capacity to bring my own child into the world, I tried not to invest in other people’s families. I wouldn’t say I hid away… but I was never the first to volunteer to hold a new baby!!!
I was put on Metformin which did what it was meant to and by January of 2017 we were holding a positive pregnancy test and couldn’t believe that we had defied medical odds. Being even able to conceive a baby is a privilege that is too often taken for granted and I was determined to enjoy this experience from the start, so I started busily planning. I couldn’t even help but spill the beans to immediate family as soon as we found out and of course this was particularly music to my Mother’s ears as a First Time Grandparent. My husband and I filled our time with listing possible names and any opportunity I had I was spending money on the pocket-sized people clothes. We discussed that our child would love crazy jungle motifs and our hearts (mine and my babies) were taken deeply and profoundly by elephants. From where this fascination sprouted I have no idea. Perhaps it was the idea of Dumbo (Baby of mine), or that they are majestic creatures and would look great as part of a stylish nursery!!!
I was in my element during my pregnancy. It was a period of time I really enjoyed. I was not taken ill each morning, in fact I recall only being sick once. There was nothing I loved more than feeling those alien kicks within. I would spend my time talking and singing to our little boy. I knew from the start it was a little boy. The bond becomes so intense; I had never felt more purpose in my life. I felt flighty yet grounded. With each week as our baby grew through all kinds of weird fruit and vegetable sizes I was proud of my bump and enjoyed wearing maternity clothes (despite the fact that many people could even barely tell that I had a bump up until Week 17/18!!) The second scan confirmed a beautifully formed boy (though we didn’t have that confirmed at the time.) The side profile screamed Daddy’s-features and I realised that I would soon be outnumbered!
The 20 week scan was one of the happiest times. I subconsciously exhaled all the fear that I had because surely we had made it through the more tenuous period. The time that you expect that if anything were to go wrong that it would be before. The scan confirmed our little wriggler (who refused to pose properly for the photo) was healthy and developing well. No immediate signs of risk, and I left feeling like I was the best baby incubator in the world! (If a little sore where the ultrasound scanner was dug into me because I hadn’t made my bladder full enough.)
I feel that this is not the post to relive the evening our whole world collapsed in on itself and a little piece of me also disappeared from the face of the Earth. I had been experiencing waves of pain which I put down to “round ligament pain” and the triage just told me to take a paracetamol and call back if the pain intensified. How was I to know as a First Time Mummy what contractions felt like? I delivered Mylo at home at 10.26pm on Saturday night which was as scary as it sounds. As I remember now the tears are stinging my eyes. I don’t think if people have experienced it they well ever understand the true gut-wrenching fear and the utter failure you feel as you have not been able to protect your baby. I had held this baby for 21 weeks then to feel it all slip away was rock bottom. What transpired was a blur and various medications that still couldn’t numb my anguish. I think my Husband worried that I wasn’t coming out of surgery. It was intrusive and long and was getting to that point that starts to make people pace in the waiting room. I was told that I wouldn’t be walking for about ten hours (yet again I was determined to prove that wrong and was able to make my own way back to the toilet before 1am.)
The time we spent following those hours was in the Snowdrop Suite which exists for those unfortunate families that experience loss/miscarriage/stillbirth and child loss after birth. The staff were tremendous and allowed for my Husband and I to have Mylo with us in the room in a specialised cot. Obviously this is a very personal preference but it helped with my own grieving process. Our boy was perfect. His little ear lobes were adorable. His hands so small. I couldn’t even conceive as to how beautiful all his features were. Eye closed peacefully and lips slightly pouted. After such a trauma it did bring me comfort to see how our little boy slept so softly and all he had known was love whilst he was in my tummy.
Of course time passes, but I have not found the wounds to heal; only that I have found new ways to live. I will always be a Mother- my arms are just empty. That has been the hardest thing tussling between the utter delight when I see others’ bellies full with babies because I would never begrudge anyone being joyful about their future children, but then I feel so empty. For weeks following the loss I experienced phantom kicks. Who am I now, now I am no longer a Mother of a living child? I have no firsts to look forward to. My social media is full of those “first day at school photos” and my first reaction is that of joy for my friends- then I remember that I won’t feel this joy if not vicariously and I feel empty and hollow again. I go through the motions of my day. I try to make myself approachable professionally and personally. At my office enough time has passed that my co-workers seem to forget the massive shake up my whole body and soul has gone through and I try to explain that I am a completely new person. Never a full person again. I am not the same person as I was as I believe we have had to experience the most devastating happening.
I look to the future but I will never forget as this was a defining life event. It taught me many things about myself and now I know that I will be a fantastic Mother. Before we left the hospital I held our baby and it natural and as if it was something that had been innate all my life. I am now made up of lost pieces of the child I carried and lost. Mylo will always be imprinted on my DNA. I encourage everyone to acknowledge and talk the name of our child as I never want to forget that he existed. I was treated with such dignity by our local hospital and the worst experience was made a little easier with their assistance. Technically I experienced a Still Birth as Mylo came into the world at over 20 weeks of age. Still birth and loss is still a taboo subject within our society and my aim has been to break the silence on the topic. The work that many charities do is so important such as SANDS, Aching Arms and Daddy’s With Angels to name a few. I have been prolific within the community of Angel Parents and they are some of the most tremendous and caring individuals, bound by grief and ready to support all those darker thoughts and pull you back into the light.
There are days I can barely get up, but I think that is acceptable. There is such resilience in the human spirit and ultimately kindness. I look forward whilst remembering. My son will be honoured at every opportunity. On the 12th October I will light a candle. I wish to continue my campaign into breaking the silence to reduce the statistics of antenatal loss. 15 babies a day in the UK alone is far too many. May we all show a little more compassion and never shy away from talking more openly about loss. It is one of the many ways to continue living. I look to a future where we can complete our family and Mylo’s brother or sisters will always know about their older heavenly brother who was loved and left far too soon.
Amber is twenty six years young, an avid tea drinker and a weaver of fiction. Her interested lay in philosophy, fiction and travel. She has just began a journey to wellness and practises mindfulness and enjoys cooking new dishes.
Sadly she is an angel mother and seeks to raise awareness of neonatal loss and breaking the silences. She loves stories about powerful women, history, woolly socks, baby goats, music and poetry.