Your words matter.
If there’s one takeout from our chat with extraordinary mum of 3, Kate Green - it’s that we all have a responsibility to choose our words wisely and with care. Her youngest child is 1 year old Charlie - the much adored brother of Emi and Tilda and ray of sunshine brightening the world of his parents Kate & Chris.
Kate describes Charlie as a chilled little guy who loves people: “a sweet boy with the best smile and a cheeky streak,” she says. His superpower is an extra chromosome, meaning Charlie is a person with Down Syndrome.
"He does not have downs. He is not downy. He doesn’t suffer from Down Syndrome. While Down Syndrome will shape who is and impact his growth and development in profound ways, Down Syndrome doesn’t define who he is," she says. And herein lies Kate’s mission: to empower everyone to advocate for full inclusion in society for people with Down Syndrome.
For Kate it starts at the very beginning - how to talk to parents and share the news of prenatal diagnosis, from one of negative overtones which she believes contributes to the high termination rate globally. By reframing the dialogue around Down Syndrome, she wants everyone to know that a diagnosis of Down Syndrome is more than a list of signs and symptoms.
Born at the John Hunter hospital in NSW, Kate & Sam had a prenatal diagnosis of Trisomy 21, so the neonatal team were on standby to assist. With late onset gestational diabetes, Charlie’s growth accelerated as her sugars increased, so Kate was induced at 37 weeks. “Induction started with breaking my waters, which flooded the bed and drenched the OB to her socks. I had excess fluid and was measuring 43 weeks at only 37 weeks! My labour was long but uncomplicated and Charlie arrived at 11pm, my second VBAC. Charlie was placed on my chest and after finding out he was a boy, I noticed his colour wasn't great and he was very floppy.
“He was put on CPAP within minutes of birth and taken to NICU within 10 minutes of arrival, so I missed out on all those early skin to skin moments and have very few photos of his birth because of the events,” she recalls.
Charlie spent the first few weeks in hospital requiring specialist respiratory support. Born during the pandemic, hospital protocols meant that his sisters didn’t meet him for 5 weeks and Kate & Chris initially came home without him - an and awful emotional experience. “Being home without him was so strange. Bringing him home was such a high. 12 months on from that day I'm processing emotions but so thankful we had a relatively uncomplicated stay,” Kate says.
Mixed fed since birth, Charlie needed formula in NICU until Kate’s milk came in and has had his EBM fortified with formula for extra calories since 6 weeks.
“Charlie was on CPAP for three days and then on high flow oxygen for 3.5 more weeks. We then spent a week trying to get him to feed orally, by breast and bottle without success. He was discharged home after 33 days with a feeding tube which really didn't feel that daunting after all we had already been through,” Kate recalls.
“We have always had a small pump to assist with the tube feeding, especially as he is fed for 18 hours of the day at a slow rate for tolerance. [I am] very thankful the dietician set us up with this before leaving NICU. Charlie has oral dysfunction and gags when a bottle or nipple or anything is placed too far in his mouth - it has been that way since birth. We have been trying solids since 5 months of age under the direction of our team. He loves the sensory experiences by isn't ingesting food in any nutritional way yet,” Kate describes.
Kate attempted to direct feed and bottle feed with support, expressing breastmilk in the NICU with high hopes of direct feeding eventually, but as time went on it was clear that Charlie needed his tube long term: “I made peace with exclusively expressing for him for as long as I could. I expressed for 13 months, through 3 rounds of mastitis, dairy intolerance, 3 hospital admissions for Charlie and being a mum to three young children. It was not easy, physically or mentally, but it was worth it. I am so thankful that I was able to pump enough for Charlie to be fed breast milk until 14mths of age and even donate another 40 litres to local mums and bubs who needed the extra help. Charlie is still fully reliant on his tube and is now receiving formula.”
As the family settles into the rhythm and hum of life with three kids, Kate is utilising social media to share her message of joy and love for Charlie. “There is so much stigma attached to Down Syndrome within society, and it can leave families like mine feeling judged and excluded for choosing to have Charlie even after knowing he would be born with Down Syndrome. The elective termination rate is growing (i know that's a big topic) and if I can help even one family not be as fearful about their diagnosis then I have made a huge difference.”
“By sharing Charlie with the world I hope that we can show how worthy of life, of love and of happiness he is, like all humans. Instagram helped me see real individuals and their families with Down Syndrome from around the world and helped me see a future so much brighter than what a google search of Down Syndrome offered our family," she says.
A quick scroll through her joyful account @charliebear_321 and you will find Kate’s positivity shine through the hashtags #nothingdownaboutit and #downrightperfect - a way to showcase the beautiful individuals with Down Syndrome. Sharing humanises the condition and helps to take away the negative connotations. It has also helped to connect families both locally and overseas and create a supportive community.
So what can we do to help support parents like Kate & Sam, and better still - how do we model inclusivity?
“Support is hard... for me it is definitely language. 'What's wrong with him?' is a question we have gotten and it's hard because nothing is 'wrong' with Charlie. Charlie is perfect to me, extra special with his extra chromosome.
“Don't ask, 'Didn’t you test for that?'. 12 week screening can help identify increased chances of a Trisomic condition, but it's okay not to get those tests too. It's also okay to get the tests and know the chances, get further testing and CHOOSE to have your child. Termination is not what everyone wants.
“Using person-first language is the best start (little boy with Down Syndrome vs Down Syndrome boy), although as Charlie gets older he may want to call himself a Down Syndrome Boy as part of his identity and we will follow his lead. Educating our kids on disabilities not being a scary thing, promoting inclusion at every age and stage is super important. Kids are naturally more accepting than adults until they learn some less than inclusive behaviours from us.
Individuals with Down Syndrome will have rich, fulfilling, happy lives, just like any other individual is capable of - don't underestimate anyone with a disability.”