'My baby was born with Down Syndrome. Doctors only focused on her potential limitations.'

First time mum and coaching psychologist Ingerlise Svaleng was excited to meet her new baby after an uneventful pregnancy.

"I went into labour six weeks early and had all these unopened pregnancy books I planned to read on maternity leave," Ingerlise laughs.

"Fortunately, I had a great birth, and my first thought as I felt the weight of my new baby girl on my chest was that it was the happiest moment of my life! She screamed, she latched on to breastfeed, and got a perfect 10/10 on the newborn APGAR score. It was joyous."

Watch: Vanessa Cranfield on parenting a child with Down syndrome. Post continues below.

The next day, as Ingerlise and her husband Daniel continued to bask in that new baby glow, they were called into the doctor’s office for what they assumed was a routine chat.

"We were still in heaven as we waltzed into the room that morning but immediately sensed a weird vibe as the energy shifted around us. The doctor told us that Maia had Down syndrome, and the nurse began to cry. I think when you are given unexpected news like that you don’t really know what to do and it was as if my brain just shut down. 

"I was influenced by the sombre mood around me and because I didn’t really know what to do, I also began to cry. I wanted to get out of that room and back to celebrating the life of my beautiful new baby."

Reflecting on the birth seven years later, Ingerlise says that it is an outdated way to talk about someone’s new baby. 

"Imagine if after you have given birth, you are taken into a gloomy room where doctors tell you all the devastating things that happen in the course of a human life?

"But when you have a child with a disability, this is exactly what takes place. You get given long detailed lists of all the terrible potential outcomes - like a map to a languishing future but it’s not a real map. 

"It was such a strange and unfair beginning to my beautiful Maia’s rich and meaningful future life."

A few days after the birth, while still in hospital in her native Norway, Ingerlise was given a red suitcase filled with letters, gifts, and books from parents and family members who had lived experience with Down syndrome.

"I absolutely loved it! One of the books was written by an ex colleague of mine who had a daughter with Down syndrome and it was all about her life and the amazing things they had done. It was the most wonderful gift of hope."

Ingerlise, Daniel, and Maia moved back to Australia when Maia was a few months old and she soon realised the 'red suitcase' concept didn’t exist, but was desperately needed.

"I was sitting with Maia in a meeting with a genetic counsellor when they started talking about her mental health risks later in life. 

"I thought, hold on, something's not quite right in the way that this information is presented. That was my 'a-ha' moment to make a change.

"The red suitcase gift in Norway had meant everything to me and the more people I spoke to, the more I realised other parents were getting that same unfair start to their child’s beautiful life. I decided to create a similar 'welcome suitcase' concept to Australia, and I added my own positive psychology slant from my professional background."

Listen: Mia Freedman chats to Melanie Dimmet about life as a mum of a child with cerebral palsy. Post continues below.

21 Gifts began as a passion project for Ingerlise, but soon took on a life of its own.

"At first I thought it would be amazing if we could get our suitcases into five hospitals. Within a matter of months, the concept had exploded and now we’re in more than 120 hospitals across Australia and New Zealand."

The strength based concept of 21 Gifts includes health professionals giving the 'welcome to the world' baby suitcases to parents at time of diagnosis, but also seminars and workshops for health professionals on how to deliver unexpected news to parents in a hopeful way. 

Through a recent $16,500 community grant from Mable, Ingerlise and the 21 Gifts team have developed the HOPE Guide, the country’s first independent medical practitioner’s guide to deliver a child disability diagnosis.

"We have created a collaborative model with health professionals, academics, parents, and people living with disability. I’m not here to shift blame, health professionals are incredible. They are heroes, and many have been trained in a very outdated model of looking at disability. 

"When I'm speaking to them, they often say that those first diagnosis moments are really difficult for them too - they stress about how to deliver news to new parents and they need guidance. 21 Gifts provides a framework that helps the parents, but it also helps the health professionals."

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For any new mum receiving a Down syndrome diagnosis in Australia in 2022, Ingerlise says the situation should be quite different to when Maia was born seven years ago.

"It should just be a mix of congratulations with a factual and straight to the point diagnosis. No 'sorrys', no 'sympathies', no 'at leasts', or long lists of all the things that can go wrong. Not too much information but a sense of reassurance that things will be okay, delivered with the suitcase that I call the 'suitcase for a new adventure' because that is what it is.

"Life is full of twists and turns and every life is full of ups and downs but it is going to be beautiful. New parents need to know that they can write their own story and just because their child has Down syndrome, it doesn’t define them or their family. I want [health professionals] to say, 'Go home and treat your baby as you would any other baby. Love them and thrive together'."

After the success of 21 Gifts for parents of babies with Down syndrome, Ingerlise has begun working with families of children diagnosed with cerebral palsy.

"At every conference or seminar, health professionals would ask me whether we could extend our offerings to make it work for other diagnoses. So I listened to the medical community, and I had two friends who have children with cerebral palsy so I spoke with them for their experience and ideas. I already have the hospital network so we plan to roll out the CP suitcases from December."

Three years after Maia’s birth, Daniel and Ingerlise welcomed baby Lola who is now aged four. The sisters are very different but are the very best of friends.

"They love and adore each other. Maia is very happy, calm, and very curious, which is brilliant. I call Maia my 'zen koala' and Lola is more like a wild little butterfly. They balance each other out because they either calm each other down, or bring each other up!"

Looking at her now seven-year-old daughter Maia living her beautiful, happy life, Ingerlise feels passionately that children should never be limited by a diagnosis they are given at birth.

"I'm always thinking that she knows how to live a good life because she'll go and sit in the sun and just look up at the trees. She’s like a life coach!

"Our story has always been one of joy and hope, not sadness, and with 21 Gifts, I want to ensure we continue to help health professionals and guide families towards creating a flourishing future for their child."

The next round of Mable community grants open on November 1. Find out more at their website.  

Learn more about 21 Gifts via the website or by following them on Instagram @twentyonegifts 

Feature Image: Supplied