My son died…..

Welcome to my second blog!For my second blog I wanted to introduce my first born son. 

As I have said before I am a Mummy to three boys. My first born son was called Ethan. Yes you read that correct. Was. 

My son died. Those three words often make other people feel really uncomfortable.

Guess what? There is a lot more that makes me feel uncomfortable!!!
I got pregnant with Ethan 5 months after I got married. We found out on the 8th February 2014 and we couldn’t have been happier.

I always wanted to be a Mummy and have a family, I had a wonderful step son and wanted to have a baby of my own and expand our family. We were so excited and couldn’t wait to share our news with everyone! 

Naturally in my head I suddenly planned my entire future with our baby, after all what could possibly go wrong…….I was pregnant of course I was going to come home with my baby….

Looking back now I feel so naive, I didn’t have a clue that things could go wrong. 
Anyway, I had a perfectly normal pregnancy. I went for my 12 week scan and there he was! My tiny sweet precious baby! He had a heartbeat and was swooshing around nicely in my belly! It was Mother’s Day and my birthday within a day of each other when we told our parents and close friends, I mean what better time? It was a memorable day to tell them and seemed like a perfect Mother’s Day present…..

We told everyone else after my 12 week scan.
I was absolutely over the moon telling everyone that we were expecting a baby! I was so thrilled, it was finally me! I was expecting my first baby! I had waited so long to be this woman that was creating life, I planned everything in my head getting carried away with myself. I had always wanted to be a Mummy and now I was.
So our planning began, we started thinking of names, buying clothes, planning the nursery, everything…….
I was around 19 weeks on my husbands birthday and suddenly I felt him move! My husband was thrilled as he felt him too and it was the perfect birthday present! I looked and felt fabulous, my bump was growing nicely and I had felt Ethan kick me for the first time. Life was great.
Just less than a week after my husbands birthday was the 20 week scan. Tuesday 3rd June at 8:30am. I woke up that morning and I remember receiving text messages saying how excited people were and were we finding out what we were having? The truth is for some reason I wasn’t excited, I don’t even know why. I had no reason to. Everything was progressing nicely and all my appointments had been ok and we heard his heart beating only a few weeks before the 20 week scan. Call it Mother’s intuition but something didn’t sit right with me that morning and I was nervous. 
Off we went to the hospital for our scan, she called our name and in I was. I lay down on the couch and out came the scanner probe and the cold jelly on my lovely round bump! She was there for a while and unfortunately our baby was being a little monkey and facing my spine so she couldn’t see everything and asked us to go for a walk outside and drink some caffeine to get get him moving, but so far everything seemed OK. 

So off we went for a little walk, blissfully unaware that our world was about to come crashing down around us. 

After 20 minutes I was back on the couch cold jelly and scanner probe at the ready. It didn’t take her too long before so replaced the scanner probe and said she just needed to go and get someone else in. At this point we still didn’t think anything was wrong. I work for the NHS myself and we often go and ask for our colleagues opinion on things, so this was normal right?
The other technician came in and sat down, introduced herself and said that she had just come in to check some measurements. Now I can’t remember how long she actually scanned me this lady but looking back it felt like seconds as something clicked in my head, something was wrong. She replaced the scanner probe and turned to me and said “I’m really sorry but I think there is something wrong with your baby’s heart”. 

My world came crashing down around me. It literally felt like someone had grabbed my heart, ripped it from my chest and stamped on it on the floor. 
Now some things from this point are a bit of a blur to say the least. 

I remember being ushered into another room with just a few chairs, a picture of a plant on the wall, a coffee table and a box of tissues on the table. A lady came to speak to us about having to go to another hospital for a specialist scan and could we go now? She must have said a bunch of other things too but I have no idea. I remember texting a few people like parents and may be close friends I don’t know and telling them that there was possibly something wrong with baby’s heart and that we had to have a further scan. 
We arrived at the next hospital and sat down in the waiting area, my heart was pounding in my chest, I don’t think my husband and I said two words to each other. Neither of us knew what to do or say or what to expect. 

My name was called and in I went, there was three people in the room. A specialist nurse and two consultants. I lay back on the bed, I had a screen in front so we could see what was happening and the big scanner at the side of me. 
On went the cold jelly and scanner probe again…….

I squeezed my husbands hand so so very tightly, I didn’t let go, the tears were rolling down my cheeks. I was so scared of what they were going to say, I had a thousand questions and thoughts running through my head. I have to say the people in the room were extremely nice. They tried to chat to us and help us relax a little, the consultant even asked me what I did for a job…

I turned to him and said “I work in Cardiology”, his jaw dropped and that was a conversation stopper right there! 
I was scanned for hours (in fact in total I think it was almost 4 hours that day that I was scanned). 

Part way through they had to stop as baby had moved again and was facing my back so they couldn’t get everything they needed to. So off we went for another walk and more caffeine and chocolate! At his point all we knew was that there was a narrowing of the arteries. As we were walking around my husband asked me what I thought they could do for narrowing of the arteries. So my brain went into work mode talking through things I thought they could do, I mean surely it was fixable right? 
After 20 minutes of walking around we went back into the room for the rest of the heart scan. 

I don’t remember this bit of the scan at all (I have been told since that shock and such trauma can often cause memory loss). The next thing I remember is being asked to take a seat in the room next door. So in we went and sat in a very similar room to before, a couch and a few chairs, a coffee table, box of tissues and a picture of a plant on the wall. 

The consultant came in with a pen and paper in hand.

As he sat there talking to us I remember, thinking this is not happening, this can’t be happening to us. He explained to us that our baby had four very severe heart defects. He had severe hypo-plastic left heart syndrome, severe aortic stenosis, severe aortic coarction and a huge atrial septic defect. I couldn’t believe what he was telling me. I sat there in disbelief trying desperately to take it all in. 

Then came ‘the choices’………..

We had several ‘choices’ (I use these ‘ ‘ as to us we don’t feel like we had a choice), we could continue the pregnancy and try and save his life, which would require 5 major heart operations within the first year of his life, the first very shortly after birth and eventually a heart transplant. He would suffer, he wouldn’t have been able to walk, talk, breathe, eat or play properly. Each operation would be a 50/50 chance of him surviving, he would most likely suffer and even with a heart transplant he would most likely die by the age of 20. 

We could continue with the pregnancy to the end, go into labour and just not intervene and let our baby die peacefully. Our final option was to chose to deliver him early and ultimately save him suffering. 
I couldn’t believe it, just yesterday I was sat getting excited that I was half way through the pregnancy and half way through paining the nursery and sorting through some of the clothes we had bought……and now I was sat deciding the fate of my baby and ultimately when would I let them die? This week or in a few years after lots of operations and suffering? He left us for a few minutes to give us time to think. To say we both broke down into floods of tears is an understatement of the century! 

What had we done wrong? Why was it happening to us? 
In the end it all got too much and we just wanted to go home. We told them we would phone the following day. So off home we went. 

That wasn’t the end of it though…….

We had to tell our family and friends. How the hell do you tell your parents that their grandchild they were so excitedly expecting was so severely poorly and broken that they were going to die?! 

The next few days are a blur. We had a few visitors. People brought us food, chocolates etc. I phoned the hospital and gave them our decision. 

My husband and I decided that we didn’t want to let our baby suffer and that we would deliver him early and end his suffering early. 

We had to get our hospital bag ready to go in, I had to be induced to go into labour and deliver our baby that we couldn’t bring home. What on earth do you pack to take to the hospital when you are going to deliver a baby that is going to die? 
I had to go in to hospital for a few hours on the Thursday to take some tablets and get my body ready to think it was going to go into labour. Or at least that’s what I think it was (terrible memory again!). My husband and I curled up on the bed together in the antenatal ward playing solitaire or whatever whilst listening to the expectant Mum’s outside on scanners hearing their baby’s heart beating away nicely…….
Friends and family continued to visit as I sat there, blank face, numb inside feeling my baby inside happily kicking away…….
Anyway in we went on the Saturday and everything was explained to us, we signed all the forms etc and confirmed our decision. We were in the butterfly room which is for bereaved parents on the labour ward.

I took the tablets and off we went. That was it. I had been induced and labour was going to start. 

It took around 12 hours from the first tablet to our son actually arriving. I had contractions and everything. The pain was intense from my heart and my stomach. The urge to push came shortly after 1am, my husband pressed the button and the nursing staff came in. Our precious angel was born at 1:12am on the Sunday morning. He was utterly perfect. Ten tiny fingers and ten tiny toes. They wrapped him up and handed him to me. 

Now I had been warned about this next bit, as our son lay lifeless and silent in my arms, my husband sat with me, he took a tiny breath! I couldn’t believe it! My heart kept with excitement and I stupidly thought for a second ‘yes he might be OK’ (I knew he wouldn’t be but it was that false hope for one second). I gave him to my husband and he had a cuddle too, he took another breath! We alerted the nurse, who said she had to ring a Doctor to come and see him. My husband handed him back to me and there he took his third and final breath in my arms. My son was gone. 

The Doctor came and pronounced his death. It was official. He is now registered as being alive for 28 minutes.

Our parents came to the hospital to meet him and we all sat around drinking tea and eating toast. I never took my eyes off him. I let people hold him but ultimately the need to protect him was still there and I wanted to hold him all the time to protect him. It probably doesn’t make sense that but my son had just died, what is there to make sense of in such a tragic time of my life. Nothing was going to make sense again. My world had been flipped upside down, my life had changed forever, how could I possibly be the same person again after such a tragic loss? 

As we sat there in silence I could hear the faint sounds of other ladies in labour and their babies crying whilst mine lay there in my arms lifeless. They say the worse noise in the world is silence and it’s true, we brought a baby into the world in complete silence. To say it was heart breaking was a complete understatement. 
It was around 10am on the Sunday morning and we had to try and leave to go home. As my husband and parents gathered our things together I was giving my son a final cuddle. A final kiss goodbye. I final everything. 

I had been given a memory box full of different things such as hand and foot prints, a matching teddy and leaflets……..I lay my son in his cuddle cot, I asked the nurse to look after him and out I went. My box of leaflets in one hand, my husbands hand in the other. I left the ward in floods of tears and screaming that I couldn’t do it, I couldn’t leave my baby. I wanted him back and I couldn’t leave him. 
I have no idea really what happened after that. People sent cards and flowers, some people brought food. 

We registered our sons birth and death and got the certificates (bloody traumatic I can tell you! I sat in the waiting room next to a baby!!) 

We started to plan our sons funeral. What flowers to have, what songs to pick, poems etc. How the bloody hell was I supposed to plan my babies funeral? How was I supposed to sit and look at a bunch of god damn bloody flowers! I week ago I was picking out colours for the nursery and now I was picking the colour of his coffin and what song to be played etc! 
The funeral eventually came and happened. The coffin was blue, the songs had been picked, blue flowers lay upon his tiny coffin. I bought a brand new blue top and asked everyone to wear blue. It was a lovely warm and sunny day. We had a lovely turn out of friends and family, the service was as perfect as it could be. We let balloons off back at home afterwards. 
Having a funeral for your child is something I can’t even begin to describe. I mean your children outlive you not the other way around! 
I once read somewhere that the human heart isn’t designed for this kind of grief and it’s true. It’s a pain like no other and can be compared to absolutely nothing. 

No expectant parent expects to picking out a coffin for their child, it’s just not something your supposed to do!
The journey following the funeral was immense, there is so much to over come as a bereaved parent and so much that runs through your mind. Anger, guilt, pain and sadness to name but a few. So many question and so little answers. 

Life after loosing a baby is by no means an easy one, there are so many fears we face, first Christmas, first anniversary, due dates, Mother’s Day, Father’s Day etc

Each once is so hard to overcome. Each one a reminder that your baby is no longer here. 

Experiencing those questions for the first time, “how many children have you got?”, “have you got any children?”, “how’s the pregnancy going?” “What do you have a boy or girl?”

There are so many other things that you have to go through too, like people saying louts of wrongs things! Their heart is in the right place but believe me I have had a lot of hurtful comments on the past and still get some now! 
Life seems to go on for everyone else and they get back to normal while your left with empty arms and aching heart, wondering why the hell did it have to be me and when will I feel normal again?! It’s hard to get back on your feet afterwards, it took my several months but thankfully I had some wonderful support.
The grief never ends as a bereaved parent, my loss is almost exactly three years ago now and sometimes it still gets harder to breathe when I think of what happened. I still don’t know how I got through it all, I just know I did because I had to! I still get upset at anniversaries and Christmas, Mother’s Day and Father’s Day. They will always be difficult because I will always feel like he is missing from our life. I personally like to keep his memory alive, I take him flowers, I have his pictures up at home, he has teddies and other bits on a shelf in our living room. 
Life is very difficult for grieving parents after they are are born and the grief never ends. 

If you ever come into contact with someone who has lost their baby, don’t be afraid to ask their baby their name, people never do and believe me it will make that parents day! They don’t want their child to be ignored or forgotten about! 

 

There is lots of support online for people who have lost a baby or know someone who has lost a baby, there is help and information for other people on how to help someone who has lost a baby, what to say and what not say. 
I will leave a few links at the end of this blog. 
If you got to the end of this I applaud you as it was a very long one this one and for that I am sorry! 

I wanted to tell my story properly though as let’s face it. This is the only part of his life that I can ever talk about ever. 
Love and miss you always, my darling precious angel Ethan. His life a beautiful memory, his absence a silent grief.

Always loved never forgotten.

Forever my angel and forever my baby. 
Hope you have enjoyed my second blog as much as I enjoyed sharing my story. 


Emma

#dyspraxicdomesticatedmummy 

https://www.sands.org.uk
http://www.arc-uk.org
Please feel free to leave comments below or get in touch via email. 

There are lots more things I could talk about! It’s a never ending subject. If you would like more information or anything please ask. 

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6 thoughts on “My son died…..

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  1. My heart and soul goes out to you . Hopefully one day it will all make sense life is precious your little boy will be playing with all the other angels . Bless you ❤️🌹

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