Hi! My name is Heidi, and I’m Hope’s mum. My husband, Ben, and I, feel so lucky to be able to share Hope’s journey with you all. We want to be completely open and honest, almost vulnerable, to help people get an understanding of what life is like with a child who has Down syndrome. We want to be able to share the ups and downs, the meltdowns and the celebrations. We want people to come along, share in our story, and realise that Down syndrome is not as scary as you may think. Children and adults with Down syndrome should be loved, cherished and treated the same as all others. Along the way, I’m hoping to share not only our story but perhaps some stories from other parents. (I don’t have any lined up, but I know some parents and carers who I’m sure would love to share.)

So… with all that said, I’ll get into our first blog post.

My initial plan was to share ‘The Story So Far…’ but then I realised, as Hope nears her 2nd birthday, there’s really too much to share in one blog post, and far too many big pivotal moments, that we can’t simply brush past. So we start with…. The News.

I’m sure everyone has experienced something in their life where you have a certain expectation but then something doesn’t quite go as planned, and the whole world feels like it has turned upside down, sometimes perhaps in a good way, sometimes in a not so good way. That happened multiple times during my pregnancy with Hope.

I still remember the look on Ben’s face, the complete shock and excitement all at once, but that’s all I remember of that appointment. I think the shock took over. It was a surprise to both of us, but at the same time, I felt like I knew it was coming. I had actually found myself Googling things like ‘could I be having twins?’ in the days before the appointment, it was like I had some idea, but you still don’t go in expecting to hear that you are carrying two babies. I can’t imagine the shock parents feel when they are told they’re carrying triplets. I had no idea about what was to come next.

The first time it happened, was in our first ultrasound at around 8 weeks gestation. We walked into that appointment, full of smiles, ready to see our little jelly bean for the first time on the fuzzy little screen. We’d been through this before with our first son, Lincoln, so we knew what to expect. I had been laying down for less than 30 seconds with the goop on my belly and the sonographer was getting the images on the screen when she stopped and looked at us and said, “What do you see?”. I looked at Ben then back at the sonographer and responded in question, “a baby?”. “Two babies!” we were told.

The second time the world was turned upside down was at our next scan, about 6 weeks later, at 14 weeks gestation. At this scan, the sonographer measures the nuchal translucency, a fluid-filled space at the back of your baby’s neck, to look for potential chromosomal abnormalities. Again, with this being our second pregnancy, we had some ideas of how these scans would go but this time, it didn’t go quite the same. We knew something wasn’t quite right when measurements for one baby were quite different from the other. I didn’t really know what I was looking at, I’m not a professional, but I knew there was a difference in the numbers, and I was curious as to what that meant. After all the scans and measurements were taken, calculations were being done, and Ben and I were being told all sorts of things about the measurements and what that could mean but, I don’t know that either of us really understood or heard what was being said. In our minds, what we heard is… “something is not quite right”. We were told to go for a walk for 10 minutes and then come back because they wanted to talk to us, but they needed to get some numbers from the doctors at the hospital. So, off we went, trying to figure out what was going on, and what all this meant. We didn’t have this with Lincoln, we didn’t have to come back and sit and have a chat. What was wrong with our baby?

We went back and the doctor shared the news. According to the measurements, one twin had a low to moderate chance of having Down syndrome. With all the measurements taken, we all believed it was looking quite positive and while there was a chance, it seemed that everything else was showing signs that we had two perfectly healthy babies on the way. However, there was a little voice in Bens’ mind that didn’t go away and he wanted to be sure. While everything seemed positive, there was still a chance, and so after some discussion we decided to pay the fee for the Harmony test (NIPT) to get a more conclusive result. No matter what this test was to show, we knew it wouldn’t change anything about how we treated the pregnancy. What it would allow us, was time to prepare if anything did come up. So we took the test.

It was probably one of the longest weeks of our lives as we waited for those results, hoping for the best but not having any idea really what to expect. And then we got the call. “I’m so sorry, when I was told, I didn’t want it to be you”. That’s what the doctor said to us, and we knew exactly what she meant. “There is a high chance, with 99% accuracy, that one or both of your twins will have Down syndrome.” Even now when I think about it I get teary. We love Hope, and we wouldn’t change her for the world, but it’s such an emotional ride that started from before she was even born. In that moment, all the ideas and thoughts about how life would be suddenly collapsed beneath us.

Growing up, I was always that person that would hide from Down syndrome. Not because I didn’t like it, it was more that I didn’t know how to deal with it or how to communicate with those who had Down syndrome. I always had this thought that I had to act differently around them, I had to be a different person, talk in a different way. When we got the news, I was faced with a new fear… I’m not going to know how to talk to my own child! This wasn’t the only fear I was suddenly faced with, I had so much going through my head. How do I talk to them? How do I raise them? What if I favour the twin? Will I ignore them because I don’t know how to do anything for them? I suddenly had images of me being the worst parent ever to this child that would need a mother more than anything. When I shared this with Ben, he simply said, “You just be a mum! You’re a great mum to Lincoln. You just keep being that person.” Could it really be that easy? Two years in and I don’t feel like I’m a failure. Hope is thriving and she is not at all ignored. Ben was right, I just needed to be me. I needed to be the mum he knew I was, and would always be.

Ben had a completely different experience. He works with disability services, he sees children and adults with Down syndrome every day and I think in some ways, it made it harder for him. He’s seen the worst case scenarios, he knows how difficult it can be, but he’s also seen those that have worked hard, and are living great lives. Both of us spent much of the 2 weeks, after receiving the news, in tears. We were just trying to process everything. We had conversations with parents who had been through what we had gone through, we had chats with close friends but nobody could really tell us ‘everything is going to be alright’ and know it was 100% truth. What we had to continue to remind ourselves was that we had two healthy babies. While one was likely to have Down syndrome, they were healthy, they were growing, everything was fine. Compared to what we could be facing, Down syndrome was such a small thing so eventually tears stopped, we focused on getting ourselves prepared, finding out everything we needed to, and armed ourselves with knowledge to ensure our baby was going to have an awesome life, no matter what.

Little did we know, there were more expectations about to be messed with… but I’ll talk about that in another blog.

As I’ve mentioned, I want to be completely open and honest. I’m not going to say we were happy about the news, I’m not going to pretend we were totally fine with it. It did take time for us to accept, it took time for us to really understand what this diagnosis would mean for us, but through the whole pregnancy, never once were we prepared to give up on our child. We knew whatever challenges were coming our way, we could face them together and we would get through it.

I do wonder though, where did my initial fear response come from? Is it lack of education? It is that the world tries to hide what it feels to be “different”? Whatever the reason, I’m hoping somehow, in our own way, through this blog, we are helping fill in gaps and teaching others, so in coming years, people are no longer afraid of Down Syndrome.