Tag Archives: Edwards syndrome

November 6^th 2022

TRIGGER WARNING (this post talks about baby loss, grief and ptsd)

(I refer to ‘mums’ throughout this post as it is we who have to live with the knowledge we are carrying a baby with serious health complications and all the physical and emotional aspects of pregnancy alongside. This isn’t intended to dismiss the impact on fathers, family and friends, the repercussions of trisomy have a devastating ripple effect on everyone. I can only write this from my own perspective and my own experience.)

I’ve been trying to decide what I want to cover in my next post and it seems I’ve have delayed and delayed writing! There is so much I want to say and I’ve been torn about when and how to continue the early days of Ambers and my journey, from pregnancy and then everything about our time together in ‘this’ world. The year has rushed on and I have remained stuck and struggling with my words.

What I’ve come to realise though is that I’m finding it hard to relive it all which makes writing about it difficult. My mental health this last couple of years has taken a nosedive into a place I never imagined I would find myself and I feel like I’m swimming through glue and not really getting anywhere.

So.. I’ve decided to try and put this into words. The experience of losing my daughter and how it has affected my mental health. Things which can sometimes help a little, things which make it worse. How people around me have reacted, how their reactions impact on me. About how it feels to be a ghost in my life while the world continues on. I want to talk about how it’s ok to be not ok, even when the rest of the world often disagrees and thinks you should be ‘healing’ by now. I don’t imagine this is going to be the cheeriest of musings but I do think it’s important. I want other families to know that they’re not alone. I often feel like I’m going crazy but I know now, that for a parent who has lost a child this is normal. This is MY new normal and I somehow have to embrace it whilst still trying to live without Amber.

I’m going to start with all the hardest things and try to end this post with the things I find helpful or most comforting.

In my ‘letter’ to Amber which was read out at her funeral service (this letter is also published now on this blog) I said I felt like I had been crying forever. I still feel that. My tears now though are never filled with hope or small moments of joy, I’m only left with the heartbreak and despair. My biggest fear, that of losing Amber came true and with that loss was shattered the fragile hope that I had clung to throughout my pregnancy and her life. So to give some context of how I have come to be as I am today I need to go back and explain a little of our journey.

When I first got Ambers diagnosis I knew nothing of Trisomy 18 and what followed was a rapid, intensive journey of research, learning and decisions, a journey that I know is familiar to every family who receives such a diagnosis. I’ve lost count of how many people I have spoken to, starting of course with my fetal medicine team and then Ambers paediatrician, Soft UK, other mums, my sister and then thankfully Dr Martin McCaffrey.

There was really no time to relax, I spent hours on my computer and in those moments I could ‘just sit’, all I could think about was the most probable outcome that I would lose my daughter and if I chose to continue and give her a chance at life, this would likely be during my pregnancy.

Initially I decided no choice could be made until I knew more, I was already 20 weeks pregnant though so I could feel Amber kicking, moving constantly, she was so ALIVE and the thought of ending the pregnancy was horrific. Having had two miscarriages so recently, the second of which had been extremely traumatic, Amber was my rainbow baby and the thought of losing her unimaginable.

I lived day by day and decided I had to try get to at least 24 weeks so she could have her birth certificate. I met her paediatrician at 25 weeks, Philine, who was so wonderful that alongside Alison (my fetal medicine consultant) I made the decision to continue my pregnancy. I think deep down I always knew I would but that was when the choice was absolute. By 30 weeks I realised that I had switched from preparing myself for losing her to planning for her life. By the time I went into hospital at 37 weeks to have her I was filled with hope but engulfed in fear.

We spent 10 weeks in hospital, Amber and I and then 2 weeks at home. Weeks filled with beautiful memories and every second with her was so precious. I have so many gorgeous memories of her and I cherish every one but at the same time I find that I struggle to focus on the ‘happy’ times.

I always knew that no matter what happened, whether Amber died before birth, after birth or even had she lived that there would be trauma, grief and difficult times. I tried to prepare for loss, whether that was my expectations of what her life was supposed to have been or the actual physical loss of her and I really never had any idea of how to get through it all and how to survive myself. I know now, deep down I was already struggling with the trauma of my two previous miscarriages and that I hadn’t (still haven’t in fact) dealt with those losses. As other mums who have received such a diagnosis will know, you go into autopilot. Your own health and needs often fade and your focus is on doing what is best for your baby. You always have to be selfless when you have children but when you have a baby like Amber this is even more true. Their needs are so complex that yours take a back seat. Your days are filled with impossible choices, doubts, fears and second guessing yourself, trying to figure out what to do for the best, all the while praying that your little one will be one of the lucky ones. That they will live.

So the last couple of years have run into one another and there has been a constant stream of events which have been stressful, traumatic and combined have resulted in me feeling lost and broken, scrambling to figure out who the ‘new me’ is.

After Amber died and up until her funeral, in those early days all I could focus on was planning her funeral, cry, drive most days over 90 miles to see her and hold her in the funeral home, cry some more and wish for a sleep that I wouldn’t wake up from, unless it was to realise it was all a bad dream and she was still with me. The shock, disbelief and devastation were overwhelming and the only ‘peace’ if you can call it that was the long hours I spent with her in my arms, in a tiny room, sat by her tiny casket and hating that I would have to leave her at closing time. I felt physical pain at her loss, couldn’t sleep and missed the chaos of her routine. But I could still hold her, read to her, see her. My daughter was still in my arms and honestly I didn’t know how I was ever going to be able to walk away. It was utterly nightmarish and there was at least one friend who I believe was pretty horrified at how long I would sit in the funeral home with Amber in my arms. Honestly though, that’s the only thing that kept me going. The long silent drive along Loch Ness and the desperation to get to her was all encompassing and it was that which I clung to, that need to feel the weight of her in my arms.

I’ve always struggled with the platitudes that people say after you lose a loved one and since I have lost Amber I find them even worse. There is no loss comparable to losing a child and most people can’t comprehend that loss, not that you would want them to of course. I know that people mean well. I know they intend their words to be comforting. I know that mostly they haven’t got a clue what to say and I try to remind myself of that, every time someone says something to me that makes me feel worse.

‘It wasn’t meant to be.’ Yes it was. She WAS here. She was my daughter and she should have lived.

‘At least you got some time with her.’ Of course I’m grateful I had time with her, every second was the most precious in the world, that doesn’t make losing her any easier.

‘Well you knew you’d probably lose her.’ Just…No. It is the most unhelpful and hurtful comment.

‘You’re so strong, you’ll survive this.’ I’m not strong because I choose to be, I’m a grieving mother and I have another daughter whom I love very much. She needs me too.

‘Give it some time, time heals.’ Nope, I don’t believe it does. I think we eventually learn to live with the pain but it never goes away or heals, especially not when you lose your child.

‘She’s in a better place now.’ This one I particularly hate. The best place for Amber is in my arms.

‘At least you’ve got your other daughter and her little boy.’ Oh honestly this is a tough one.. I’m so unbelievably grateful and blessed to have Coreigh and Oliver. They have been my anchors to life this last year, kept me going and I love them beyond measure. I also love Amber beyond measure. This is an unbearable, hurtful comment. You don’t find losing a child less painful because you have another child. It doesn’t make your grief ‘easier’, if anything it makes it more complicated. I have worried so much this last year that Coreigh has struggled with my pain, worried that she may feel she is not enough, when she always has been and is my precious firstborn. She IS enough, she is my best friend and my reason for living. My heart is big enough to love her and to still feel eternal grief for Amber. There is no one or the other.. they are both my daughters and I know Coreigh has found it hard watching me crumble with pain, whilst I wonder how to support her with the loss of her little sister, all when I have to lean on her for support to get through each day.

I often feel guilty for having these thoughts. Am I being ungrateful? Is it wrong to feel angry when people say these things? Is it normal to want to rage and scream and fall to my knees to try and make people understand how I feel? I have learnt to take a deep breath, keep quiet, bite my lip and smother the scream that I actually want to let loose. I have cried and sobbed and clawed at the floor and pillows. Collapsed from grief more than once but to actually scream… well I’d probably frighten my neighbours! It is an exhausting pretence to keep up. (I will be using the word exhausting a lot!)

I did scream once, wholeheartedly and loudly alone in my car, away from anyone who could hear it. I needed to release it and it had got to the point I couldn’t breathe. It shocked me, the loudness of it. It was an alien, primal sound I hadn’t realised I was capable of. This is the first time I’ve told anyone I did it and yes, maybe I’ll do it again. I now know that’s ok.

About two weeks after Ambers funeral I realised I had a problem. In those first days after her death my doctor gave me diazepam, anything to try and numb me and allow me some sleep and escape from the pain. Wine didn’t help, I began smoking again two days after she passed (having quit for over 4 years this is just another thing to feel bad about, as now, I’m struggling to kick the habit again.) I cried constantly, with occasional times of numbness from exhaustion and barely slept or ate. It wasn’t just grief though, I had horrendous flashbacks to some of the most traumatic of moments. I lay sleepless in bed hearing the alarms from all the monitors that Amber had been attached to, her ventilator, the cpap, the heart monitors, the drugs monitors, her SATS machine. I would wake suddenly to beeps and machine screens of her heart rate flashing red, I could hear her, see her, feel her. I would sit outside on my step at night having a cigarette and see the lights of Glasgow hospital ahead of me as I walked up the main path. I could see the ambulance outside my house as it pulled up to bring her home. I could feel the recliner seat under me as I held my tiny daughter in my arms. I would see her face next to me when I rolled over in bed. I was back in the car watching the darkness as we drove to Glasgow hospital from Inverness praying she was still alive.

My mum would say to me it was normal to remember all the traumatic times but these weren’t memories. I was there, reliving it in the moment and I couldn’t turn it off, prevent it from happening or stop it when it did. It was all encompassing and my heart would race, I couldn’t breathe, I had panic attacks, massive anxiety and felt like I couldn’t sit with my grief because it wasn’t ‘past’ it was still present and very much real and in the ‘now.’

I had been speaking with a psychologist since late in my pregnancy, referred to her by Ambers paediatrician as my GP had been struggling to get me referred for support during pregnancy. She works with parents whose children are in SCBU or on the childrens ward. She (Tracy) is wonderful and gentle, knew all about Amber and our journey and it was she who diagnosed me with PTSD (post traumatic stress disorder) a couple of weeks after the funeral. A diagnosis I only associated with veterans, not something I knew anything about really and certainly not one I ever dreamed I would have.

So my year has consisted of what feels like the collapse of my mental health, sanity and sense of self. I was put on antidepressants (fluoxetine) almost immediately in the hope it would help ease the anxiety and help me sleep (it hasn’t) until I could receive trauma therapy. Tracy and my GP pushed to rush things along and though the waiting list is usually 6 months after symtoms begin, due to the ‘trauma’ beginning in pregnancy rather than at the loss of Amber, I was referred to the crisis mental health team (me!??!!) who referred me for assessment to the local mental health hospital. That appointment came through fairly quickly and after a long triage appointment, they immediately confirmed a diagnosis of Complex PTSD. (This is ptsd which occurs from a series of traumatic events or a prolonged traumatic event.) and agreed I would need treatment. Unfortunately, they couldn’t say how long the waiting list would be and so I would have to manage in the meantime.

I have been lucky to have the continued support of Tracy, even though I know her workload must increase weekly and even though Amber is obviously no longer an inpatient. The childrens hospice, CHAS has a wonderful chaplain who has also been a constant source of support, listening to me cry down the phone. Other mums who I began my Trisomy pregnancy journey with and who received their diagnosis around the same time (you know who you are xx) have been lifesavers, as have other families on the Trisomy support groups and of course SOFT UK.

My family and friends have been amazing, as have my neighbours. I feel I have been enveloped in protection and love by those around me. Even though they don’t understand exactly how it feels, those closest to me all support in their individual ways and each of them gives me something unique that only that person can give, each of them has a little understanding and together they help me get through and survive each day.

What I find hard is explaining what I need, how can I when I don’t know myself. The only thing I want is the only thing no one can give me, Amber. I know I have not been the easiest person to be around this last year. I often find it difficult to express myself, even to those closest to me. My mind feels slow and confused, I am constantly exhausted, I barely sleep, I feel surges of anger at Ambers father and all my hatred has been poured into him (not that he knows it, we have no contact at all but this is a tough one for me as I am not a person who ‘hates’. It is an uncomfortable feeling, especially as I can not forgive him for his behaviour and actions throughout my pregnancy and Ambers life.) I have been hopeless at keeping in touch with people, messages pile up in my inbox and phone calls often go ignored. Other than my daughter, my mum and dad and my sister, there are really only a few friends I have the energy to keep close contact with, everything else is mostly too draining and overwhelming to handle. I have become a bit of a hermit much of the time.

The anxiety has not gone away but I have mostly become better at managing it, I can walk around the supermarket or a shop without having a panic attack or meltdown, holding it in until I get back to my car. I can smile at people in the street and wish them good morning. I can usually get through a shift at work and contain my tears whilst serving customers, though I often sneak into the back and break down in between. The flashbacks, well there’s nothing I can do to control them, they still come at the most inconvenient and unexpected times. I have a crystal I carry everywhere, I held it through my labour and c section with Amber and I cling to it now to try and ground myself with something ‘real’. Orange essential oil on the advice of my psychologist can also help ground me I’ve found.

Almost a year on after losing Amber I struggle with the expectation of people to be ‘moving on’. Not those close to me, they don’t expect that but others who think I’m doing better because I’m back at work or sometimes wear a little makeup. Often I’m asked how I am, I used to worry about how to respond but now I don’t. I allow myself the honesty of saying ‘No, I’m not alright.’ I then usually change the subject because I’ve come to realise that actually, most people unless they are close to you, don’t actually want to hear about how far from ok I am. It’s a passing question to them, a hope that ‘I’m fine and getting on with it.’ Not many people know what to say to you when your baby or child has died, nor do they want to imagine or focus too closely on it. Sometimes people then say, ‘Oh, but you are feeling better than you did though? It’s got a bit easier?’ Once I was told, ‘Oh but the spring is almost here, you will start to feel better and heal.’ This, less than three months after losing my daughter. These are the times I feel the scream and have to hold back. I can not overestimate the incredible usefulness of deep breathing!

It’s a horrible place to be, like I said, I feel like a ghost in my life. I live hour by hour, days go by and I don’t know where. The world continues on around me and I don’t feel part of it. Everything I was, everything I enjoyed has become uninteresting and unimportant. I think of Amber constantly, the longing for her has not got less but I haven’t grieved. The ptsd is all consuming and often trying to focus on the beautiful memories of her leads into more flashbacks and reliving of the trauma. It adds to the exhaustion and feelings of hopelessness. At times I have felt like I’m going mad and that my life will never be ‘normal’ again. I put a mask on for the world so often that I don’t know who I am anymore.

My trauma therapy started in September, much quicker than I expected. After a few weeks of assessment and talking it was decided that EMDR (Eye movement desensitization and reprocessing) was most likely going to be the most helpful for me. I’ve had a bit of a crash course in PTSD, so for those of you who know little about it here it is in brief.

Normally, our brains process memories, mostly during our REM sleep, moving them from our short term memory to our long term memory. Our brains then understand these things are ‘past’ and though obviously not all our memories are happy because they have gone through the correct channels they are processed.

During trauma our brains natural coping mechanism can be overloaded and these experiences can become frozen and unprocessed in the wrong part of our brain, in a raw, emotional state. PTSD or CPTSD can occur from either a single trigger event (ie a car crash) or continuous trauma (ie War or as in my case incidents during Ambers ‘journey’) These can be triggered as your brain continuously tries to process the memories but they are ‘stuck’. So you can end up with terrifying flashbacks which feel like ‘now’, anxiety, panic, despair and also often physical symptoms. I often find my heart racing, my body tensing up and find it hard to breathe, as well as having headaches, physical aches and pains and insomnia.

EMDR uses bilateral stimulation, typically eye movements or tapping (I use the tapping method with my arms crossed at my chest and tap alternately on each shoulder during treatment) to recreate REM sleep to help process the traumatic events you want to treat.

I’m finding the therapy hard work, every Friday I re-live part of a selected trauma under a controlled environment to try and reprocess it. One memory often leads into another that I had forgotten, it can lead into unexpected places and it is in itself traumatic. An hours session leaves me drained, tearful and utterly shattered. I talk myself into having to attend each session because I can’t carry on like this and I want to be able to grieve my daughter and remember the happy moments I had with her. At the same time every week I try find excuses not to attend and the dread begins every Thursday night. I think it is working a little, gradually, my psychologist Anna believes it is, though she says I still have a long way to go.

I still speak once a month to the hospice chaplain, I still have a monthly check in call with my original psychologist Tracy, I am still on anti depressants. Ambers paediatrician calls once a month too just to have a chat.

I’m sorry this is such a dark post but at the same time I think it’s good to get this out in the open. Mental health problems were never something I thought would happen to me. Apart from mild teenage depression, I have generally been an optimistic type of person and found happiness in the ‘little pleasures in life’.

I just want other mums (and parents/families/friends) to know it is normal to feel like your going crazy at times and to be able to admit it to others. It is ok to be angry. It is ok to feel impatient. I have learnt from the psychologist that losing a child is not classed as a normal bereavement, it is in itself classed as a trauma. Never mind everything else that we go through as Trisomy parents along the way.

I also believe that despite it all I have been lucky, I was lucky to have such a wonderful little girl, a warrior child who fought for life with everything she had. A baby girl with an old soul, I’m sure she had lived before, she had such wisdom and calmness in her eyes.

My coping mechanisms for now are a bit hit and miss but I am trying! My daughter Coreigh is my lifeline, we have morning coffee over video call most days, I hug my grandson, my dogs are a constant source of comfort and cuddles, I clean A LOT (doing anything to distract yourself is another trauma symptom which helps you avoid thinking), I’ve managed to actually read a book, I can listen to music again (sometimes), I try to do yoga, I call my closest friends or can turn up at their house if I need a hug. I created a beautiful garden for Amber and she has very expensive taste! She’s definitely around me all the time, I can feel her and she lets me know exactly what she wants! I’ve even started to venture into my craft room, though usually half heartedly (it should be Ambers nursery). I talk to Amber all the time and I still carry her (ashes) to bed every evening and kiss her goodnight. Is that a bit crazy? I don’t care if it is… it’s become routine and feels impossible to change now. Often I just sit outside in her garden and look at the stars, it makes me feel small but also I imagine her up there dancing on them under the light of the moon.

Dr Una Mcfadyen messaged often me after Amber had passed, in one message she told me about a song she had just heard about how ‘stars are the holes in Heaven.’ That’s how I like to think of my little fox now. Peering down at me through the stars, always with me until I can hold her again but for now having fun with all our Trisomy angels while they wait for us.

But I still feel broken. I am not healed. It is not easier. I cry every day.

So to all of you who have an angel in the stars, I understand and I send you love.