Dispelling the myths of Down Syndrome and embracing the joy of Emma

London mom Melissa McLean knew early in her pregnancy her baby had a 90 per cent chance of having Down Syndrome. And 36 hours after Emma was born, she was diagnosed with Mosaic Down Syndrome, a rare form of Down Syndrome. 

Since then McLean has made it her mission to share her family's journey with the world, to dispel myths about the disorder and to encourage inclusivity. Melissa and Emma recently sat down with London Morning show host Rebecca Zandbergen.

What was it like when she was born?

We found out for sure about 36 hours after birth. She was delivered via emergency c-section, so they took her cord blood and analyzed that. Then we had the genetic specialist come up to the room about 36 hours later and confirmed the diagnosis that way.

And what was it like when you received that news?

Sad, but we expected it. Those first 36 hours the nurses and the medical staff who knew what was going on were like, 'She doesn't look like she has it,' 'Oh, she's so beautiful,' 'She looks perfect.' We expected it, but the actual conversation was hard. 

I watched a video that you posted on Instagram where you talk about grieving. Grieving the life you thought you might have with your baby. And then you move onto something else. Tell me about moving on.

We didn't want to spend my entire pregnancy being sad or upset about something that wasn't going to change and it didn't matter to us whether or not she had Down Syndrome. It didn't change anything for us. So we spent that time grieving before she came so that when she was here, we were able to enjoy her and not worry about that. I think moving forward, we just wanted to give her the best we could.

Why did you want to share this journey publicly?

I think it helps change the conversation a little and open people up to seeing that babies with Down Syndrome are just like regular babies.

Tell me about that first Instagram post.

So, I'd been thinking about that post for months obviously. We had kept the knowledge about her diagnosis just to family and close friends up until that point. We didn't want people to feel uncomfortable, and for me that was kind of just like shouting it out to the world and having people know they could come and talk to us about it. Unfortunately, when you receive a diagnosis like this, a lot of people's initial reaction is to apologize, and we weren't sorry. So as much as that comes from a place of love and support, we're not sorry. We don't want people to apologize. We wouldn't change her if we could.

What have you learned about biases and stereotypes that are still out there?

A lot. We are incredibly fortunate. We have a wonderful support system and Emma is incredibly loved by our family and our friends and everyone that's met her. But it's crazy that there's all this dated, old information about Down Syndrome and statistics. It's something people are afraid of and scared of. That was the focus. She's obviously adorable. It's not something to be worried about. We just wanted to have people be open to the idea that she's just like everybody else.

As Emma gets older I think it will be more apparent to others that she has Down Syndrome. Do you worry about that?

A little. I'd be lying if I said I didn't. I know the older she gets and the more she develops, and we see where she may be having those issues, that it will be prevalent to people. I think leading up to that, I've started to deal with biases when I've told people about her as well. So I think it will be hard and I think we'll just deal with it as it comes. But it's going to happen at some point. It's unavoidable. 

Language is important. Can you address that?

So, what I prefer to use is 'people first' language which is pretty common in online Instagram communities as well. It's just acknowledging the person or the individual instead of acknowledging the diagnosis.

So give me an example.

Some of the older generations say the 'Down's baby' or things like that which is kind of offensive language to be using at this point. She does have Down Syndrome, but that's not all she is. And we just want to focus on the fact that it's Emma first and not her diagnosis.

What has been the number one lesson you've learned over her 13 months being here?

That she's just like every other baby, and she's beautiful and amazing, and she makes us happy and proud everyday. She's quite the cheesy drama queen but she's hilarious. And that we're just so incredibly lucky to have her and to have all of this support we have in this city and with our family. She's embraced very well and it can only go up from here for her.