'I thought, why us?': Pippa's Down syndrome diagnosis was like a 'big rollercoaster'

Pippa is two-and-a-half years old. Today is World Down Syndrome day.

When Lisa Shelly gave birth to her daughter Pippa two-and-a-half years ago, she knew very little about Down syndrome.

“It was an afterbirth diagnosis,” she said. “It was a big rollercoaster. She was eight weeks early as well. It was an emergency C section and she was in the ICU for five weeks. It was very, very tough.

“I thought why us? But once it lands on your doorstep, you just see what a great kid she is.” 

Pippa has also had multiple health issues, such as a hole in her heart and more recently sleep apnoea, requiring regular care over the two years.

“And we do get great care,” Ms Shelly said. “I can’t give out about early intervention. Pippa has gotten what she needs while I hear other parents who are fighting and fighting. If we had that on top of what we’re going through…” 

It is estimated that there are around 7,000 people in Ireland with Down syndrome, accounting for around one in every 444 live births or 110 babies each year.

Ms Shelly said at first, she and her partner were “getting our heads around her diagnosis”.

“I was thinking I didn’t want a child with Down syndrome,” she said. “I was going through grieving for the child I imagined we have. It took two weeks for the test to come back. But when we got her diagnosis, I said ‘we can deal with this now’.

She’s a typical child. I want the world to see her. And I don’t want anyone else to go through what I did. I want new parents to be able to look forward. 

"The pain is terrible from an afterbirth diagnosis. I knew another mother and she was saying all these things to me and she said ‘I promise you’ll see it’. And I did. And I want to get that through to other people.”

Today is World Down Syndrome Day, which is being marked by Down Syndrome Ireland with its Lots of Socks campaign to raise awareness.

The organisation operates 25 branches nationwide, and has over 3,500 members. It provides supports such as early development programmes, pre-school home teaching and speech and language therapy.

As well as donning socks and posting to social media today, it is asking for donations as 80% of its running costs each year must be met through fundraising.

A few months after Pippa was born, Ms Shelly became involved with her local DSI branch in Kildare.

“Loads of people were saying to get in contact with DSI,” she said. “At the start, I kept saying I don’t want to be involved with any of that. But then when I set up Pippa’s [Instagram] page, I wanted to show people it’s not such a scary thing.

“The DSI have been so, so good to us. Anything I need, I can give them a ring or email and they’re on the other end of the line. They understand what I’m saying because they work with children with Down syndrome.” 

Lisa Shelley and Pippa: 'You do have down days. It’s not easy by any means. It’s so rewarding at the same time. And it’s what you get back then that makes it worthwhile.'

Ms Shelly also two boys, aged 6 and 11, and she said their reaction to their younger sister was one of her worries after Pippa’s diagnosis.

“But they’re brilliant,” she said. “That’s their little sister.”

The theme of this year’s World Down Syndrome Day is inclusion, and all that that entails.

Ms Shelly said that she is worried thinking ahead of when Pippa goes to school.

“It is playing on my mind,” she said. “She’s too early to go. But you can’t hold her back because she has Down syndrome. She’s a great kid.

“I do worry about that part when she’s older. I know kids do stare, and they slag. But I just hope other people get a bit more knowledge on it. They’re all human beings. We’re all human beings. It’s more about seeing who a person is first and foremost.” 

Seeing beyond any person’s disability is at the heart of the kind of inclusion we should expect to see in our society, Ms Shelly said.

Setting up an Instagram page to document her daughter’s journey has been a great help in terms of communicating and connecting with other parents.

“It’s a wonderful community,” she said. “I document what’s going on, and then you have back and forth with others. It’s definitely great to reach out because you go can into your little world, and maybe feel a bit depressed. 

“You do have down days. It’s not easy by any means. It’s so rewarding at the same time. And it’s what you get back then that makes it worthwhile.”