Results Day - "It's bad news I'm afraid"

It just so happened that we was to get our test results for the Harmony Test whilst Dom was away on a short boys break. I said to him “shall I just text you the results when I get them? I’m sure it will be fine”. At that time I was open to the results being anything and thought to myself whatever the news I’ll be fine, I don’t need him here. 

I was sat at my Mums just me and the dog when I got the call, “Hi Lucy it’s (whatever her name was) calling from the Fetal Medicine Center at Harley Street... oh yes hello... Lucy it’s bad news I’m afraid.” At that moment I nodded taking in those words “it’s bad news”. She continued “your test results come back to check for the Trisomy 21 in your DNA and it is 99%”. Right okay sorry I’m not really taking in what you’re saying, so I said “can you tell me how they measure that, how do they get that result where does 99% come from?” I was confused and wanted to understand what she (whoever she was, receptionist, doctor or “bad news” caller) was telling me. “You’ll be emailed the results” Right okay that’s fine I can sit and read them. Okay thanks bye. 

My results - I have taken out personal details and dates.

I don’t know whether it was a delayed reaction but I just sat and stared into space and then felt like someone had my heart in their hands and was slowing crushing it into tiny pieces. I cried so hard, I felt so lonely at that moment & then receiving the email of the test results that read Trisomy 21 - 99% probability. I cried even harder. 

Through watery eyes I text Dom saying ‘can you talk?’ I didn’t want to tell him on the phone but I felt completely lost. Just broken. I called and from what I recall the conversation went something like “I got the results back Dom, the woman called and she said it’s bad news”. He didn’t want to know anymore he just said right okay then. I could tell he was probably a little bit tipsy - day time drinking as you do on a boys trip & most probably not the best time to get a call such as this. Dom said “Luce it doesn’t matter I love you and I love our baby, we got this it’s going to be okay”. I felt better immediately and nodded and said ‘okay I love you too Dom’.

It felt like it wasn’t really happening, like an outer body experience as they say. Like I said I can’t really recall every detail, only how I felt in that moment, as if everything was swirling and I didn’t know what to grab onto even though I was sitting down. My heart was sinking and all I wanted to do was hold Dom and never let him go.

I managed to pull myself together and drive back to our flat, I just needed to be at our home.

Don’t let social media fool you! I took this image a day after I received our news <3

I would also like to point out here that the way I was given the results was in fact really negative and you should NEVER tell someone in that situation that its “bad news”. That made me really angry later on once I had started digesting the information, because you are instantly putting the baby into a negative category that what you have been told is bad. The woman on the phone had also said that the results were only 99%, to be 100% sure I would need a CVS which involves removing and testing a small sample of cells from the placenta using either a needle or invasive. This has a 1% chance of miscarriage, and for me 99% was high enough to know I didn’t want to take the risk of loosing the baby. I told this woman I didn’t want the CVS as I was carrying on the pregnancy regardless, to which I think she sounded a little taken aback and said ‘oh okay then’.

My Dad was the first person to see me after I had received the results, which meant I had to repeat the news. He said to me “every time you tell your story it will become easier” which I thought was very wise. It was saying it out loud to every person, but now here I am 5 weeks down the line since our results telling our story so far, and it does get easier. Especially when writing this blog, I am putting my honest thoughts and feelings down for anyone to read, I thought this would be read mostly by my family and friends but hoping that it reaches someone who needs it. We have been overwhelmed with the response so far and it also means that people know our story, we don’t have to tell it to everyone we cross paths with. That doesn’t mean I don’t want to, but it gives others understanding and maybe the world could use a little more honesty and kindness. So that’s what I am here for, to tell our story, the good, the bad and the beautiful. That Downs Syndrome isn’t the “bad news” you may initially expect it to be, that in actual fact we have been blessed to conceive a child that I know for a fact will bring nothing but utter happiness and love into our lives. Yes we may have challenging times ahead, but isn’t that life? Is that not what we are here for to learn and grow in ourselves and try to make the world a better place.

This post has taken me longer to write as it was the most difficult and trying time we have both experienced so far. After receiving the results I found it hard to look at or read anything to do with DS, I just didn’t want to accept it. I felt incredibly broken, the only hope I had was when I thought about a client’s little boy who has Downs and I would never forget his beautiful face and nature. I reached out to this client, told her our news, I didn’t know what I wanted her to say or what I wanted to say but I just needed to hear something from a Mother who has experienced this first hand. She made me feel so much comfort and positivity, I honestly had a feeling deep down that I knew everything was going to turn out okay. When I say that I don’t mean that our child is to be born without Downs and the doctors have got it all wrong, but that the baby was going to change our lives for the better. I knew that and I felt it, but I also felt an overwhelming sadness and my heart felt so heavy. I couldn’t help but feel so sad.

This client said to me, “it’s okay to grieve for a child you imagined you would have”. WOW, that hit the nail on the head. That is exactly how I felt, I couldn’t quite make sense of it at first but when she said that I felt better in fact. I knew then it was okay and natural to feel that way, that I shouldn’t feel bad or guilty. In all my tears of sadness I felt guilt knowing I was crying over a baby I was still carrying. How dare I! But it is OKAY, we are human beings and we all grow up with an ideal of how our lives are going to be. How our children are going to be and everything will be so wonderful. So it was a process Dom and I was to both go through, grief of a child we imagined we would have, and digesting this news would take us time but I just prayed to God for strength. I prayed a few times and also asked ‘Why?’, why me, why us, I thought I was a good person and then I have been given this “bad news”. But that makes a person ungrateful, and an ungrateful person is an unhappy person. Again I felt guilt in thinking “why me?” but in the same breath I prayed that I trust in the process that God has planned for us.

Whatever you believe in, and I am not going into religion, but whether you have a certain faith or not. There are things in life you simply cannot change, you could alter those things by making a different decision. My decision from the moment we was told at our 12 week scan that our baby could potentially have Downs, was that I was always going to continue my pregnancy whether that meant I do it alone or we do it as a couple. As much heartache as our results give me, I believe you are only ever given what you can handle. Once you accept that, life can become a little easier and you will start to see the silver linings.

If you know anyone experiencing the same situation, or you are that person I would love to hear from you. I promise you that you have been chosen to carry a child who will make the world a better place, special people are picked to bring even more special humans into this world.

The Harmony Test - Week 14

14 weeks cooked <3

We travelled up to Harley Street to the Fetal Medicine Centre to have this Harmony Test.

We were both pretty anxious but planned to go for a nice dinner afterwards or even some shopping to make ourselves feel better about why we was there. We go in to have our analomy scan - which you have done by the NHS at 18-22 weeks - but paying for this private Harmony Test you get a scan with it also. So the baby is still only 14 weeks which I suppose you can only tell so much from, but the only thing I was looking forward to that day was seeing our little babe on the screen again :)

There the baby was upside down being stubborn - definitely take after their Dad with that one - so I had to do a little jump up and down to get them round the right way. So we got to see our baby again and my heart melted, “look at it” I said to Dominic and we was both transfixed on the screen. Scared to breath and nervous as hell, I just wanted this new doctor to say to us “they must have got it wrong in your first scan the babies neck measurements are absolutely fine!”. But he didn’t. He said the fluid on the baby’s neck had decreased to around 4.2mm, so Dom piped up “then it’s gone down by 10%'“ to which I looked at him and felt so proud our baby didn’t have to rely on me for my mathematical skills which I lack in. Okay so that is promising, at this moment we would hold onto anything and that was something at least.

The doctor continued to check the little limbs, kidneys, stomach, brain etc and said “looks good” as he got to each one. He got to the heart and we listened to our baby’s heartbeat for the first time, we both melted with happiness at that sound - they are really there, they do exist! The doctor didn’t say a word as he checked over the heart, and again my nerves increased.

When he was done checking, Dom asked the doctor what he thought in his professional opinion just by looking at the little scan as to whether there seemed like anything was wrong with the baby. To which the Doctor replied, “the baby is showing a heart defect, which is really common in babies with Downs”. Woah. Another blow. I could feel my own heart crack and wanted to just cry so bad but I held it together, we both did. Dom and I didn’t even look at each other, I felt like I would just break down if I did. So in my mind it was looking very likely that our little baby’s chances of having Downs Syndrome was very high and I cannot say how I felt in that moment but surreal. The Doctor left the room and came back to see us in each others arm and maybe he thought we needed hope I don’t know, but he said “The fluid could be there because of the heart defect. So it could just be a very minor heart defect and thats it”. If I’m honest that made me feel better and gave me some hope if any, even though you don’t want your baby to have a heart defect either.

I really did hold onto that it could just be a heart defect, which sounds so awful ‘just’ a heart defect but people live with these all the time. I had high hopes and felt really quite positive about our situation after leaving the Center, I would describe myself as a pretty open minded person. My Dad would say I always see the negatives in everything and sometimes can be a little overdramatic with a scenario, but I look at all outcomes. I like to be prepared for the worse in life but also I can see so much positivity even when others can’t. This is still our baby and conception in itself for anyone is a miracle, I have dreamed and imagined this for so long my time was finally here and with the right person by my side.

I had my bloods done after the analomy test which to be honest is what took my mind off what we had been told about the baby’s possible heart defect. An atrioventricular septal defect to be exact - again they were only over 14 weeks so still early stages to find out anything certain. Who enjoys having their blood taken, not many people I am sure and I am one of those that thinks too much about it and I get light headed, woozy and feel like I am going to throw up. So I had the joy of that next - yay! Well it was all a bit dramatic as my veins collapsed three times whilst she was trying to take my bloods so I had to have a lay down in her office with some water. All the while Dom had popped to the shop as I told him ‘just go I’ll be absolutely fine on my own’ - famous last words. So yes that took our minds off the second blow we had received as we just laughed at how scared I was over the bloods being done.

Again my family & friends were calling and texting me all day to see how we had got on, I found it so difficult to tell them that they had in fact picked up a heart defect. I eventually spoke to my Mum who I had been avoiding to tell, just because I didn’t want to relive the pain I felt when I said it out loud. But as always she is my strongest supporter and knows exactly what to say - I am so very grateful to have her in my life, in both our lives. I replied to my friends texts to tell them the news so far and every time I was sat with my phone in my hand with my eyes filled with tears. It really started to sink in then, and it hurt, it hurt a lot.

We was to wait up to 7 days to receive a call on my results, the results would be 99% accurate and could tell me my odds by checking my DNA and seeing whether I was carrying Trisomy 21 which is also known as Down’s Syndrome. Trisomy 21 is the extra chromosome which is genetically formed during conception, I suppose it is just something that could happen to anyone at any age. Being 28 I would say I am still young, most people associate an older woman maybe 40+ having a child with Trisomy 21. But nope, it can happen and it does happen and we was to find out if we had been chosen to carry a baby with Downs Syndrome.

Having a little look around the shops after we had been for our tests, all smiles but really we was hurting on the inside. I tell you what makes a strong couple and all this “couple goals” is actually the hard and toughest times that life throws at you. That’s what can determine whether your relationship can stand that, and I truly believe ours can <3

12 Week Scan

I felt sick with nerves going to the scan, even though we had already seen you at 9 weeks when you was a tiny bean. The early scan was more for peace of mind that there was a baby and they had a heartbeat, my partner booked it as a little birthday gift which was really special.

Going to the 12 week scan is a little surreal, you want to know that all this sickness, tiredness, lack of appetite is for a reason and that there is in fact a little babe growing with a heartbeat! So there you was on the screen looking so much bigger than the first time we saw you, we could clearly make out all the parts of your body. It blew my mind, I wish we had it on film so I could just re watch that every day and have that incredibly overwhelming feeling of seeing you. Even looking at your scan photo now brings tears to my eyes, I can’t quite believe you are ours. You was wriggling around so much, stretching out your little arms and legs, I didn’t even think you could do that! We was truly blown away. Then the scanner told us everything looks good, but you was showing a marker for Downs Syndrome. We was knocked for six.

I know for me the only thing you hope for going to any scan is a healthy baby, and to see that they have a heartbeat. Working with newborns and meeting new parents all the time I hear so many stories, good and bad, so I feel like now it’s my time I was more prepared for anything. But I never prepared myself for this.

We was taken into another room and sat with a midwife from the Foetal Medicine Department. We listened as the midwife told us that the screening showed you had “quite a large measurement” of fluid on the back of your neck, but that some babies had even larger measurements and were born without Downs Syndrome or some didn’t have it show up at all and were born with DS. I was to have a blood test and get the results back that afternoon on my odds of you being born with Downs Syndrome. I then understood why some people don’t have the screening at all, why would you want to put yourself through this stress and worry of do they, don’t they? I didn’t even think about it when I agreed to the screening, I just thought okay whatever you have to do, I’ve not done this before so I just assumed that everyone has the screening.

We left the hospital and I just broke down into tears, I didn’t even know how I was feeling but it hurt. I was confused and didn’t understand what this meant or why this was happening, but it wasn’t 100% accurate its “just a marker” they told us. I remember having all my friends and family texting me asking how it went and I couldn’t even bring myself to tell them, my heart felt broken.

I got a call later that day to hear that my odds of having a baby with Downs Syndrome was 1 in 6. Wow thats incredibly high odds. That rung in my ears. We was told if we wanted to be certain then we had two options. One of them is a blood test called a Harmony Test, this is 99% accurate that you have to book privately for and the other is an invasive, an Amniocentesis where a sample of the amniotic fluid surrounding the fetus is withdrawn through a needle inserted into the mother's uterus. The amniocentesis is 100% accurate, however there is a 1% chance of miscarriage, and that was a 1% I wasn’t willing to take or put myself through. So we went for the Harmony Test and made an appointment at the Fetal Medicine Centre at Harley Street, I had been recommended this place by a few clients anyway and then my midwife mentioned them so we booked there.

We was to go to our scan at Harley Street the following week, which I will blog about in my next post on our results.

At this stage I would like to point out my reasons for blogging such an intimate and personal matter. Firstly it’s a lot easier to talk about now at 19 weeks, although I still have my moments I break into a little cry when I tell people close to me. Weirdly I find telling people I have no emotional connection to a lot easier, mostly clients for that matter I can quite easily tell them but friends/family I suppose in a way I feel scared to tell. Secondly, I never in my wildest dreams considered that our little babe may have Downs Syndrome. I knew nothing about how or why they may have it, my only friend of knowledge was Google.

My Mum bless her done lots of reading right away and was calling me everyday with more information, which helped but at the same time you don’t want to hear it. You’re sick of hearing it and you just want it all to go away, you don’t want it to be true. At that time nobody mentioned termination, we will come to that later. In my mind no matter what the results were I was going ahead with my pregnancy. I had known about the baby since I was 4 weeks pregnant so for 8 weeks I was sick everyday, I struggled in the heat - no drinking during the World Cup or socialising for that matter I mean thats enough in itself without having to list the rest.

Pregnancy is a real mental battle and nobody talks about that until you are pregnant. You just got to believe that this little white stick with a blue line is telling you “yay you’re pregnant” and your there like okay what happens now? You start to change, mentally and maybe not so much physically but I could feel the changes starting to happen within my body. Maybe some are more in tune with their bodies than others, I know I am. So fast forward those first few months of sickness and lack of food - very unlike me - there you are at your 12 week scan and you’re heart is pounding because you want to know that baby is really there. Then you are given the news they could have DS and it feels like a punch in the face. I know this second point is super long, I do like to drift off subject so please bare with me. What I needed at that time most importantly was to know I wasn’t the only one. That we as a couple weren’t the only people going through this. I read a few blogs which I will list in my next post that really helped me start to accept the news. I just hope that by documenting our journey it helps someone in the same or similar situation not feel alone, and know its okay to feel sad about your baby when you should feel happy and that it’s not the end of the world. I also hope that by reading this a lot of you are educated on Downs Syndrome and I can turn quite a negatively portrayed subject into one that is in fact very positive and beautiful.

We started taking bump polaroids from 5 weeks, my 12 week one I look the most miserable, I think I had been crying and wasn’t in the mood to do it but forced myself to. I am so glad now that I did but looking at this makes me feel so sad because I know how I felt at that moment.