Jossie’s Story, by her mum, Steph
When I was pregnant with my little girl, we refused any testing for Down syndrome, or any other condition, because it wouldn’t have changed the outcome for us. At our 20 week scan, we were told our precious girl had holes in her heart and also spine and brain queries. We were told she could die and asked if we wanted an amniocentesis to confirm. Edwards, Patau and Down syndrome were all mentioned as possibilities, and termination was also brought to the table.
At this point we made it crystal clear that termination was not an option, and would not be at any point. We refused any diagnostic tests and just accepted tests to monitor her progress. The main reason we refused diagnostic tests was because the only ones offered were invasive and carried a risk of miscarriage. Our girl was very much wanted, no matter what.
Over time her spine and brain queries disappeared altogether, and we were just left with the heart issues. We were told she could still die, and surgery would be needed within the first months of her life. We were again offered an amniocentesis but refused, and we made it very clear that our standpoint on that was not going to change.
Fast forward … and our beautiful Jossie girl was born at 37 weeks. And though we had a few days on NICU, we were home within 6 days, and she didn’t have anything more than one overnight stay for the next 11 months. Down syndrome was confirmed at 3 days old and, in all honesty, looking back, their solemnity would not have been out of place telling a parent their child was going to die! Oh, how much power doctors have at point of diagnosis! This is what needs to change.
Now I must mention this because, initially her prognosis was pretty dire. But our amazing girl thrived, and continues to do so. She had surgery at 11 months old because, although she was healthy and never looked like a cardiac patient, she had several holes that were never going to heal on their own.
Now, fast forward 5 years! Jossie girl is a whole bundle of awesome, with a great mixture of mischief and fierce thrown in for good measure. What can I tell you 5 years in from the start of our journey? Jossie is loving school life. She has lots of friends, and the whole school knows who she is, as she has such a vivacious and huge character. She is feisty, fiercely independent, funny and loves everyone.
She makes us laugh daily, and draws people to her like bees to honey. Jossie is so good at ‘peopling’ and could teach the rest of us a thing or two about acceptance, with no judgement. Jossie is our every kind of wonderful. What do I wish about diagnosis? I wish I knew then what I know now. I wish I had been directed to families living the life! I wish that the medical professionals, at diagnosis, had given it in such a different way. I wish that I had met and spent time with a Jossie girl before diagnosis because I can, hand on heart, say I’d hadn’t realised how much awesome was ahead!
My hope for others that find themselves on this road, in the future, is that, at the point of diagnosis, new parents are signposted to those living the reality of Down syndrome. Because, from where we are, it’s blooming awesome and we wouldn’t change a thing.