Sunday, 14 June 2015

Our Diagnosis Story pt. 1

I wrote this nine days into what shall be known henceforth as 'The Strange Time'. I never had any intention of posting it, it was just a way of unloading everything that had happened out of my head. However, a few people have asked if I would be writing about our experience and although this is incredibly personal and emotional I decided it might actually be good to share it with the world. Nobody expects something like this to happen, I know we definitely didn't. It's a long read so I've split it into two parts, the next part of which I'll post tomorrow.

This is a very honest and emotional and if anything I say offends anyone, I apologise because it really isn't my intention. There are things in both of these posts I wasn't sure whether to include for this very reason but I really want to be honest about everything that happened and everything that went through our heads at the time. Reading other families' accounts of their experiences has helped me enormously and my hope is that by sharing this it might do the same for someone else. I also started this blog with the intention of giving an honest account of my experience of being plus size and pregnant whatever happened and I still want to do that, only now it's taken a slightly different turn.



The last nine days have been the most traumatic, exhausting and awful days of my life. We've gone from laughing at little hands waving at us from an ultrasound monitor to sobbing at little misshapen feet and what they might mean to not being able to look at all. We've gone from talking about what colour hair our baby will have to what colour his coffin should be to whether he'll ever be able to tell us what colours are at all. We both feel like we've been run over by a ten tonne truck forty times over. We've felt grief, desperation, relief, joy, apprehension, fear and so much more. 

I had a uterine doppler scan three weeks ago to check my risk for pre-eclampsia and other potential issues. During the scan the consultant noted that baby's stomach was very small and my fluid levels were very high leading her to believe he wasn't swallowing and expelling fluid as he should be. She initially put this down to potential Gestational Diabetes. I had the test a few days after which came back negative. I was incredibly pleased about the result, I didn't want to give up my Cinnamon Grahams. We had a second scan booked for last week to re-check my fluid and his tummy but we weren't worried because the consultant said it would probably go away. 

It hadn't. Infact, his stomach was so small she actually couldn't see it at all during the hour we were there. It never occurred to me that there was an issue, despite what was a twenty minute scan last time taking an hour, not even when she asked whether or not we had had the Nuchal Test for Down's Syndrome (we hadn't, we didn't think it would matter or that there would even be a chance). All Haydn and I could think was how lovely it was seeing those little hands waving at us when she lingered around his head and how long she took looking at his feet because it meant we got to too. I always listen to what they say to eachother, trying to understand the medical language but I wasn't even worried when the midwife said a measurement was off the chart, I just laughed to Haydn and said 'maybe you were right, he is going to be massive'. 

When she wiped what very little goo was left on my belly she told us she had picked a couple of things up that concerned her and that was when I started to worry. She said his feet were a bit of an odd shape; his heels were swollen giving them what they call a 'rocker bottom' appearance and his head wasn't quite the right shape either. Those two things combined with the problem with his stomach made her think he may have a chromosomal condition. She mentioned it in the same breath as Down's Syndrome but said the one he was presenting was called Trisomy 18/Edward's Syndrome but the only way we would know for sure was to have an amniocentesis. She said that although she's been doing antenatal screening for years she isn't an expert on it and we had two choices as to what we did next. We could have the amniocentesis that day (whilst being aware of the 1% chance of miscarriage) or we could wait until Thursday (it was Tuesday) and have a specialist scan at Leicester Royal Infirmary who could confirm the indicators then have the amnio. The results would take three working days so if we had it that day we would know by Friday but if we waited until Thursday we wouldn't know until next Tuesday. She wanted to do an internal exam because she was concerned the excess fluid in my stomach might cause my cervix to open so she asked me to go and empty my bladder and come back. As I waddled off to the toilet my head was spinning. I couldn't really make sense of what she had just said but I just kept thinking 'we can deal with a learning difficulty, it's not the end of the world'. 

When I went back in she had an image of his feet on the screen and was explaining to Mr D the shape of them. This is when I really saw that there was an issue. His feet really did look an odd shape. The midwife asked if we needed a minute or if we were okay to do the internal now and had we understood what the consultant was telling us. I asked if it just meant he would have a learning difficulty, to which the midwife took my hand as the consultant said words that will never, ever leave me. 'It means he's not compatible with life.' I looked at my lovely husband whose face will also stick in my mind forever. He looked like someone had just ripped his heart right out of his chest. I couldn't breathe. The consultant said she would leave us for a minute to talk. I am forever grateful to the midwife who didn't leave the room but instead talked us through what that actually meant. She told us the consultant would never have mentioned if it she wasn't really sure but that sometimes scans aren't always right and baby might be fine which is why we were given the option of having a more in depth scan at Leicester. She did keep mentioning the fact though that at 25 weeks he was past the survival stage which I didn't really understand at the time. I now know that what that meant was I was past the termination stage and at the give-birth-to-a-live-baby-who-would-die stage. 

Eventually my husband and I were left alone for a few minutes. We just held eachother and wept. We looked at eachother with absolute terror and said we could not believe this was happening. It felt like we had just been hit by a truck. I decided to get the internal out of the way so we could sit down properly and talk. I don't remember the internal exam or much of what happened after, just that we ended up in the 'quiet room'. All I could think about whilst we sat and waited for a specialist midwife to come and speak to us was how many people had sat here and had their lives changed forever. She explained what Trisomy 18/Edward's Syndrome was and that children with it didn't survive long. They could live a year or so but none made it to school age. I don't remember much of what was said other than that. We both agreed we needed to know as soon as possible so we wanted the amnio that day which meant waiting until the consultant had finished scanning patients. We waited in that room for three hours. I remember thinking how ridiculous it was that there weren't any tissues in there and looking out of the window thinking it was such a beautiful day. I didn't take my hand off my belly once. We cried, a lot. We asked why us and why our baby and cried some more. 

The amniocentesis was unpleasant. Mr D sat next to me and laid his hand next to my head and held my arm with the other. It sounds odd but being able to nuzzle his hand with my head was the most comforting thing he could have done. The midwife sat the other side and put her hand on my shoulder and helped me with my breathing to make sure my tummy was as relaxed as possible. The needle didn't hurt as such but it was uncomfortable. I felt it pop through my muscle and could physically feel it inside my belly. I was terrified the whole time that Pea would wriggle as he so often does and hit the needle but the consultant was so careful and precise. Afterwards she scanned to check his heartbeat which was fine. Hearing it still had the same calming, magical effect but this time I felt completely heartbroken with it. 

We left the hospital with the promise of a phone call on Friday the second the results came through and a booklet we were advised not to read until we got those results. I still haven't read the booklet but I know it details termination. I rang my mum as soon as we got home. Saying the words out loud felt alien. My mum just sobbed. She wanted to come over there and then but all I wanted to do was sleep so she promised to come the next morning. Telling my mum made me realise how this wasn't going to affect just us, this was going to affect everyone we loved and who loved us. 

We got into bed, held eachother and cried. I fell asleep clutching my belly but he couldn't bring himself to touch it or even look at it. He deleted scan photos off his phone. It felt like he was trying to erase him which hurt me but I understand now it was just too painful for him. 

Wednesday and Thursday are a blur. We talked a lot. We talked about how unfair it was, how we didn't deserve this, how unbelievably sad it was. We talked about what we would do if the results came back positive. I refused to look the condition up until Thursday and then I read every single thing I could possibly find. We talked about whether we could let him go full term, bring him into the world and live second to second not knowing how much time he had. We talked about whether we would regret not having whatever time we would have with him if we induced labour early. We talked about funerals. We talked about what we had wanted for him. We talked about how we would never, ever be the same again. 

I am forever grateful to my mum who refused to leave us and stayed in a hotel down the road just in case we needed her. Mr D shut himself off completely and didn't want to see anyone which is how he deals with things whereas I am the opposite. I need people. I didn't want time to think, I wanted chatter and noise. My mum took me out for some lunch on the Wednesday and I burst into a pile of tears when a little boy toddled past me. Mr D didn't eat for a while. I threw up everything I did eat. One of my two best friends, Victoria, was over from Amsterdam for the weekend (I was meant to be throwing her a 30th birthday party on the Friday). Mr D and I went and told his parents on the Thursday which was just horrible. His mum was heartbroken and even though his dad doesn't say a lot or show his emotion I could see how upset he was. After we left them Mr D went fishing and I spent a few hours with my mum and Victoria. Fishing is his meditation. He really struggled. He went from anger to sadness to acceptance and back to anger. He shut me out completely one minute but then wouldn't leave my side the next. Fishing really helped give him time to think and process what was happening. For me, I needed distraction and my mum and best friend gave me that. They talked about other things but let me talk whenever I needed to without any judgement. They reminded me that I was still pregnant and still needed to look after myself, that it was okay to smile whenever he kicked. I will never be able to thank them enough for being there. 

Friday was long and torturous. We tried to stay at home but couldn't settle so we went for a drive. We wanted lunch but couldn't face people so got a McDonalds and sat in the car at a nature reserve to eat. By 2pm we couldn't stand the waiting so I rang the hospital and asked if they had heard anything. She said the results normally come in late afternoon but she would ring the second they did. We went home and laid on the bed so I could have a sleep. 

I was asleep when they finally rang so took a second to realise that Mr D was shoving my phone in my hand. We put it on speaker phone and held hands. 

It wasn't Trisomy 18. It was Down's Syndrome.

You can read part two of our story here.
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13 comments

  1. I have so much love for you right now. I can't for a second pretend to know how you are feeling but I read this with leaky eyes... Sharing it is inspirational! x

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  2. Elena I can't possibly imagine how you and your husband are feeling, but I thank you for having the bravery to write this. Looking forward to reading part 2! Sending all the love in the world xx

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  3. Sending love and hugs to you and Mr D.
    Xx

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  4. I tried to write a comment several times over and it all sounds so insincere and bullshitty. I just want you to know you're marvellous. And I love you. But you knew that.

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  5. All the love to you and your amazing family xxx

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  6. Sending you lots of love and hugs. I can't even imagine what you are going through. Thank you for sharing xx

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  7. Sending you lots of love and hugs. I can't even imagine what you are going through. Thank you for sharing xx

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  8. Sending you lots of love and hugs. I can't even imagine what you are going through. Thank you for sharing xx

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  9. I can't even imagine how heartbreaking this experience was even reading your words it just does not compute. You both are so loved and Pea is too. So much live for your little family from mine ❤️

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  10. I'm reading this with leaky eyes. So much admiration for you for writing this all down. I cant

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  11. (Pressed send by mistake)..... I can't begin to imagine how you're feeling or what you've been going through. Lots of love to all 3 of you xx

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  12. My darling, what an incredible, beautifully-written honest post. What an unimaginably difficult emotional roller coaster. I felt your relief at the diagnosis of Down's syndrome. I hope you are getting the support you need from your medical teams. Hayley x

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  13. No words I have leaky eyes, dark times and no words can communicate what I feel for you so I send hig hugs, good thoughts and love x

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