From the moment Joelle welcomed her baby girl into their family, she became an incredible advocate in the Down syndrome community in many ways but, most powerfully through showing the world how much joy and love her daughter, Josee, brings to their normal, everyday life. Joelle’s natural warmth and positivity shines brightly and I’m pretty sure it would be physically impossible not to fall in love with her and her beautiful family as soon as you meet them. While I don’t get to see them nearly often enough, I am proud to call Joelle a fellow Queenslander and friend. Thank you for sharing your story here, Joelle. ~ Annie x
So you have just been given the news that your unborn baby is most likely going to be born with Down syndrome.
What do you do next?
That’s right, you Google it.
Good old Google.
It is great for trawling through sites of exotic holiday destinations, helpful for researching information on endangered animals for a school report, brilliant at giving me back up when I’m having a disagreement with my husband and I know I am right (okay, maybe sometimes I am wrong!)… BUT it is not, I repeat it is NOT good for investigating a diagnosis!
For starters, the most helpful information is not always the first item that comes up in a search. In fact, you may find that the third article on the 30th page is THE page that you find most helpful…. But on the way you just read 29 pages of outdated garbage which now has made you more terrified and anxious than before.
Secondly, it can bring up extremely undesirable images; particularly when it was standard practice to place children with said diagnosis into institutions, and today involves debates around termination.
Lastly, you will realise how little the world actually knows about your child’s diagnosis, and that, for the most part, this child, this tiny little human, is actually forgotten about in the scheme of the diagnosis, particularly in medical circles. To them, your child is merely a list of potential health concerns and statistics.
You might be sitting there thinking, ‘well why is she preaching this and yet she Googled her own unborn child’s diagnosis?’
Would you believe we had not one, not two, not even three, but more than five medical professionals tell us to “go Google it” along our prenatal journey! EVEN when we pleaded for information to be given to us; a brochure, a number of someone we could call, a leaflet, anything! Every time we were met with a shake of the head, a “Sorry, no, we don’t have anything” with the added comment “Just go home and Google it.”
Fortunately for me one of the very first sites I stumbled across was the American site BabyCenter. This forum style site contains a myriad of topic based boards that you can spend literally hours trawling through. I cannot tell you how many comments I sat and read when I stumbled upon it, particularly the Down syndrome pregnancy board. And finally I was brave enough to post this, my very first post into the Down syndrome community:
I am a 33yo mum to 2 children who are 8 and 11. My husband and I had our 12 wk scan which showed a nuchal fold of 3.5mm, along with my blood work, this gave us a 1 in 2 chance of carrying a baby with DS. The following week we had another scan which showed the nuchal had increased to 4.5mm and there was fluid under the baby’s skin and around the chest cavity. We were told to expect a miscarriage. 2 days later we had a CVS and received the results on Monday that our little girl has DS. We were ok with the initial thought of having a child with Down Syndrome but are now terrified with the fluid that is accumulating. We are getting another scan tomorrow to see how she is going. I have been scrolling so many forums in the past 2 wks and yours has been so helpful, thank you , Joelle
You see, when I posted this I had never felt so alone in my life. Ever.
I felt as though no one had ever faced a diagnosis of Down syndrome in their pregnancy before, let alone the additional diagnosis of hydrops (fluid accumulation in several areas). I felt let down by my medical professionals who couldn’t support me. I felt such a disconnection from anyone I knew that was pregnant without any of these complications. I just felt miserably and utterly isolated and alone.
After I posted I sat and waited, and waited, until we had our first response.
When someone responded it was like a door had opened into a whole new world. A world of support, connections, resources, love, hope and joy! Finally I had found others who had walked this journey ahead of me and some were also walking right alongside of me. I was not alone.
From there our life has been somewhat indescribable…. from that first point of contact, Josee has connected us to hundreds, if not thousands of people, right across the globe. We travelled the journey of pregnancy with women who weren’t even in the same country as us, but it didn’t matter, as they understood what we were going through. It made the journey less scary knowing that someone out there could say the words ‘me too’.
Today we run a page called Josee’s Journey; portraying our ordinary everyday life with our ‘extra’-ordinary girl (extra referring to her extra chromosome). Just over two weeks ago we travelled to the United States of America to meet some of these women I had connected with online when I was pregnant. What do you say to someone who you have known so intimately, supported you unconditionally for three years but have actually never met? Well you start with a hug, a big hug, a cry, a smile, a laugh, another cry and a huge thank you. It was amazing to be able to thank those who had helped me and as much as I can I now pay it forward to help others.
Walk on, walk on, with Hope in your heart, and you’ll never walk alone.
Joelle is a mum to three active kids, 14, 11 and 2.5, as well as a wife and, in her spare time, a teacher. They live in the bush, yet not far from the beach, and enjoy spending time together as a family. Joelle runs Josee’s page ‘Josee’s Journey’ to showcase the ‘ordinariness’ of their life living with a child who has Trisomy 21, as well as connecting families in the T21 community. You can also find them on Instagram.
Joelle’s post ‘No Prenatal Diagnosis can Predict This Kind of Happiness‘ appeared on Mummalove in October last year.