Awesome, Not Awful.
So what’s our diagnosis story . We refused any testing for Down syndrome or any other condition because it wouldn’t have changed the outcome.
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 did we want an amniocentesis to confirm. Edwards, Patau and Down syndrome were all mentioned as possibilities and termination also brought to the table. At this point we made it crystal clear that termination was not on the table and would not be at any point. We refused any diagnostic tests and just accepted tests to monitor progress. The main reason we refused diagnostic tests was because the only ones offered were invasive and carried a risk . Our girl was very much wanted no matter what.
Don’t worry as you will soon realise , the medical profession often seem to give worse case scenario and Miss Jossie has her own story to tell.
Over time her spine and brain queries disappeared altogether and we were 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 amniocentesis but refused and 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 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 they have at point of diagnosis, this is what needs to change.
Now I must mention this because initially her prognosis was pretty dire. Our awesome 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 of course, fast forward over 2 years , Jossie girl is a whole bundle of awesome, with a great mixture of mischief and fierce thrown in for good measure.
What do I wish about Jossie’s 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 have realised how much awesome was ahead .
My hope for others that hit this road in the future is that at the point of diagnosis, they 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.
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