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.
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.
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.