Monday, 15 June 2015

Our Diagnosis Story pt. 2

This is the second part of our story, you can find part one here. 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.



When we heard the words 'Down's Syndrome' we had the strangest reaction. We both broke into huge grins. All we could think was our baby wasn't going to die. He was going to live and all I felt for days after was relief. Relief that it wasn't Edward's/Trisomy18, relief that we weren't going to lose him before we ever knew him. Having the prospect of the most awful scenario presented to us made digesting a diagnosis of Down's Syndrome a lot, lot easier. 

Eventually though, reality set in. Yes, he would get a chance at life but what sort of life would it be? We knew he would have a learning disability which in DS is usually mild to moderate; I felt as though we could deal with that. A learning disability can happen to the most normal, perfect child in the world. However, with DS comes a host of health problems and to begin with we were very much in the dark about those. As happy as we were that we weren't going to lose him, we had to make a decision about what a life with Down's Syndrome meant for our baby and with that came a very difficult decision. 

We had the phone call with the amniocentesis results late Friday afternoon which meant we had the whole weekend to let it sink in. We were told we would see my consultant on Monday but they didn't know what time because they hadn't had a chance to get hold of her. Come Monday I was so antsy and sick of waiting around I rang the hospital to give them a little nudge and they told us to come in later that day to see the same antenatal screening midwife we had seen the week before. No consultant. 

We spent an hour with her and another midwife and honestly, we walked away feeling no more knowledgeable or better equipped to deal with the situation than we had before we went in. I said to Mr D before that I expected them to just give us leaflets, tell us what ifs and leave us to it and that is exactly what they did which I can't blame them for because they have to be impartial. They gave us a booklet on what Down's Syndrome is and what causes it, reeled off a list of what potential health problems came with it and discussed with us whether we wanted to continue the pregnancy or not. They painted a pretty bleak picture and essentially we had to decide whether to terminate or continue. She talked us through the termination process which at 25+ weeks would be a bit different to usual which was very difficult to hear. It was the only time I really allowed myself to think about what that would actually be like. They told us that due to my gestation we would have to make a decision as to whether we wanted to terminate or not by that Thursday as a termination at that stage would require two physician's signatures and generally unless it's an already fatal condition they are reluctant to do so beyond 27/28 weeks. So, three and a half days. They gave us three and a half days to decide whether we continued the pregnancy or terminated on a basis of what ifs and possibilities. 

The only good thing that came from that meeting was them passing on an information pack from our local Northamptonshire Down's Syndrome support group called Ups n Downs. The pack had a handful of stories from parents about their babies and children and what life was like and information on what support what available. It was good to read real life experience and see photos of these beautiful, happy little children doing things every happy little child does. That pack really helped me. 

We went home with our heads spinning. Mr D was finding it all very, very difficult. His brother has special needs and he works as a teacher for children with ASD so his whole life revolves around disability. He just kept saying over and over again that he didn't want that life for us and for our baby which although was hard to hear I understood completely. It was clear from that day that we were both feeling quite differently about the decision we had to make. However, we're very different people. 

I am an eternal optimist to the point of being a little naive sometimes. Which is odd because for over half my life I've struggled with my mental health. In a strange way I feel like that's perhaps why my mental health has been so awful; because naturally I'm a cheery, optimistic, find-the-good-in-everything sort of person so when the darkness hits it knocks me completely off my feet. I'm a very hopeful person and hope is the one thing that has kept me going for years. 

My husband is the opposite. He's definitely a pessimist. He expects the worst to happen and the smallest thing will knock him sideways leaving a gaping hole for him to dwell on. He sees things in black and white and struggles with finding grey areas even in the most mundane things. So for him a diagnosis of DS meant every possible potential health problem would happen and his learning disability would no doubt be severe. He was even convinced he would have Autism too. He is still really struggling to separate our experience from his own family's and what he sees at work. 

We needed more information. My mum asked me why we hadn't been offered the scan in Leicester with a specialist that was offered the week before when we had to decide when to have the amnio, so I rang the hospital and asked if we could have that. Fortunately the specialist had a clinic at our hospital the next day so she gave us an appointment. As it was the next day she rang and said they had been discussing it and had decided to send us to Leicester the following day for the scan because they had also gotten us an appointment with the cardiologist to take a good look at his heart as 40% of babies with DS have a heart condition. It really felt then as though they were giving us the guidance and help we needed.

So, another day and a half of waiting and mulling everything over. Mr D was seriously struggling with it and it broke my heart. I had never really appreciated the physical bond and connection you have as a mother growing a child. For him this baby was still just a possibility, it wasn't a real thing yet but to me it was very much real. Every boot in my ribs and elbow in my bladder just strengthened my love for him. He no longer felt like the same baby to either of us but he still felt like my baby. I knew already I couldn't terminate. I think I knew from the second she told us he had DS but I still felt as though I needed to know more because as much as I couldn't imagine terminating a baby I had grown to love and know in a way purely because he wasn't as we imagined, I also wanted him to have a good, happy life. A life that wasn't a series of hospital visits, operations and a long list of things he couldn't do. I needed to know he would be okay.

Our day at Leicester was extremely long, tiring and overwhelming but it gave us everything we wanted. When we arrived the antenatal screening specialist told us he had also booked us an appointment with a neonatal consultant at the end of the day to discuss everything we'd seen and just to have a bit of counselling. I honestly could have kissed him. 

I don't want to go into too much detial about everything that came up as a result of the scan because I'd rather wait until we actually have to deal with them. However, I'm happy to share the basics. His small stomach, lack of swallowing and my high amniotic fluid levels were our main concern and whilst we do now know he has a blockage in his oesophagus (which is preventing him from swallowing and expelling the fluid). It's easily fixable and once it's fixed, it won't cause him a problem. The neonatal consultant said I will still be able to give him my expressed milk for the first couple of days and then I can go on to breastfeed. Obviously it will be more of a challenge but he said they will give me a lot of support and I'm already in touch with my local La Leche League and the few mothers there who breastfeed babies with DS. It feels so much more important for me to breastfeed him now because of the health benefits for him and the extra bonding but I'm trying not to put too much pressure on myself in case it doesn't turn out how I want it to.

My fluid levels are dangerously high. I don't know what unit they're measured in but the specialist showed us a chart and at 26 weeks they should be at 15, mine are just over 30. This means I'm at great risk of going into pre-term labour due to the pressure on my cervix so I have to be monitored very closely. The likelihood is I will be induced a few weeks early which is actually a good thing because they want me to deliver at Leicester instead of my local hospital so we can be where all the specialists are. 

The other thing that came up from that day is that he does have a very small hole in his heart. The cardiologist was fantastic and made us both feel very confident about it. She said of all the potential issues he could have with his heart, this is the best case scenario and quite often these little holes close up on their own. However, if it doesn't he will require a surgery but not until he's a little older. And as with his oesophagus, when it's fixed, it's fixed and shouldn't have any impact on his life after. He'll still be able to run around and do everything a child without a hole in the heart should. 

Obviously there any things that may not present until he's born or even a little older but the two things we were most worried about are easily dealt with and won't impact his life. The consultant told us the first year or so of his life will be more difficult than that of a child without DS but I feel as though we're prepared for that and he will be under care constantly so things will be picked up quickly. 

Although being there, going from appointment to appointment and being told all these things was really tough, talking to the neonatal consultant at the end of the day was so incredibly helpful. It was exactly what we needed. He let both of us just talk and be completely honest which is quite difficult to do when a) you both have different opinions and b) you're talking about something so loaded with a stranger. He told us to ignore the Thursday cut off date for making a decision, that we really couldn't make a pressured decision like that and a few days really weren't going to make a lot of difference. 

I left the hospital feeling so much lighter but Mr D was still not where I was yet. He said he knew termination wasn't an option which I was so grateful for because I knew I wanted to continue and I was scared he didn't feel the same way. At first it was difficult feeling so differently to him about something we'd both been on the same page about a few weeks before but I knew it would take him longer. Not just because of the sort of person he is but because of this physical bond I already had. 

All the doctors and midwives we had seen talked about conditions, a diagnosis and medical-ness. No one had talked about our baby except the neonatal consultant but even then it was brief and in amongst diagrams of hearts and body parts. It felt as though as little Pea had stopped being a baby and had just become a medical condition. He'd stopped being squishy flesh, tiny toes and 12 nappy changes a day and had become a hole in the heart, a learning difficulty and an operation. I had the benefit of being able to feel him wriggle and squirm and kick. I already knew his movement habits and what made him jump around. My husband didn't have that. He didn't feel that 'please don't wake up, start moving and keep me awake' feeling whenever I got out of bed to wee in the night, he didn't know that my absent minded awful singing made him wriggle, or that he really enjoys the space my empty, hungry tummy gives him. To him, our baby was suddenly not a baby but a list of medical jargon so of course it was going to take him longer to get to where I was. 

For days I worried he would never get there but he did and anyone reading this in the same position needs to know that. The day he went back to work he came home, knelt down next to the sofa, gave me a kiss and lifted up my t-shirt and gave my belly a kiss too and I cried with relief. Over a few days he started talking about our Pea again in the same way he did before. He made jokes, he rubbed my bump with wonder and talked to him just as before. He still isn't in the same place as I am but he's getting there slowly and I have no doubt that he will because why wouldn't he? This is our baby. Our baby we didn't think we would even have for such a long time that was such a wonderful, magical surprise. Our little miracle.

It's been two weeks since we found out our baby has Down's Syndrome but it feels so much longer. Yes, our lives might be a little different to what we expected and we don't know for sure what's on the horizon but what parent does? All I have thought throughout all of this is that nothing is certain. The most perfect, normal little children get cancer, they get in accidents, they have learning difficulties out of nowhere. Anything can happen to anyone. At least we know. We have forewarning and we can be prepared. It hasn't changed how I feel about our beautiful, wriggly little baby at all. Some days are more difficult but if anything, I think I love him more and I have been so comforted and overwhelmed by the love everyone else has for him too, before he's even born. Our friends and family have been incredible. We decided to tell people because it helped us come to terms with it and I am completely bowled over by people's words. My mum gave me the brilliant idea of printing off everyone's messages of support (of which there are a LOT!) to keep in his baby book so when I have hard days I can read them and remind myself of the kindness and love that surrounds us. Our baby might need extra care but at the end of the day all he really needs is love and there is definitely plenty of that to go around!

Love,
Mrs D & Pea x
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11 comments

  1. Beautiful. I am so proud to be your Mum and Little Pea's Nanna. xxxxx

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  2. So beautiful and moving I cried reading this. I can tell that you are going to be a wonderful parents to little pea and I'm positive he will be the happiest little boy having you and Mr D as parent :)
    Xx

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  3. You are a very open and warm, wonderful person Mrs D. This is going to help so many people.
    . I think your little boy is a very lucky little boy to have 2 such very special parents. The love and understanding between you and your husband is heartwarming. Much love to you all.xx

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  4. What a lovely, heartwarming and honest post to read. Your love for your child comes across sincerely and I am in tears reading this. My husband had a friend with DS who only recenlty passed away at the age of 55. He had a very happy, fulfilled life and from your words, I know your child will have, too. Much love to you all xxxx

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  5. Like the others have said, I'm in tears at reading this, not because your beautiful son has downs, but the beautiful way you wrote about it xx can't sign in as myself, but this is Emma, met you at clothing swap, and followed your blog, and know how much your baby means to you, how beautiful your little pea is, and what a miracle to have him xx if the world was filled with more people like you, what a place it would be xx all the best for the duration if your pregnancy x love to you and your Mr, and of course your little pea xxx

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  6. Oh Elena, such a heartbreaking post, but hopeful still. You are going to have such a beautiful, darling boy! He'll have two adoring parents and the best possible start in life. You've been through such an ordeal, and I'm wishing you lots of love and endless happy times with Pea. xx

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  7. Thank you for choosing to continue writing openly about your experience, despite it not being as you expected when you began this blog.
    I've anonymously followed you're normal blog for a while and as we are planning a family soon was delighted to see you do a plus size pregnancy blog as there are so few!
    I very much look forward to your future updates. Love and good wishes to you, Mr D. and Pea x

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  8. Very moving. Good luck with everything. Exciting times. Xxx

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  9. Thank you for sharing your story. I've been in tears reading it, so very moving, and beautifully written. I can feel the love for your boy resonating from the page. You're going to be wonderful parents, even if things haven't turned out quite the way you imagined. Xx

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  10. Thank you so much for sharing your story- I know that it will help many others too. I hope that you continue to have as much help and support that you need, and I'm glad that all has been explained to you at this point. I know what it is like to experience a pregnancy which feels a little like a ticking time bomb with regards to when baby will be born and how things will be after the birth. I wish you all the love and luck in the world. Thank you for sharing your journey with #MaternityMatters x x x

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    Replies
    1. Beautifully written, life with DS is the same as normal, but slower, it's like living in remote Scotland, you just get on at your own pace with baby's milestones and every now and then it'll get you down about the other kids doing things yours should, but there are bonusses to the slower life and it does get easier, you'll be celebrating those milestones with more vigour than others, and eventually one day you wont care that they are a bit behind as they are doing new things daily :) Loving this blog xx

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