We have heard countless stories from mothers-to-be who have been bullied, ridiculed, mocked or laughed at by medical professionals for even considering to carry on. Many more negative stories of how a diagnosis was delivered. I myself had a bad experience with a consultant obstetrician with my subsequent pregnancy after Seb because I said I didn’t want an amnio “What? Why would you put yourself through that again?” she said, aghast,
After I posted about our trip to London, I was overwhelmed by some of the comments and messages of support I received. Some from personal friends merely saying they were thinking of me, or felt sad that I was so upset, some from friends who work with kids with special needs telling me how fulfilling their jobs were, some who know Seb personally and some on this page which just echoed my own feelings and made me feel less like I was going mad. Thank you every one of you.
But best of all, I received a message from a mum-to-be and, with her permission, I would like to share her experience.
“I’m currently 33 weeks pregnant with a little girl who will be born with Down syndrome. We know because we paid for the test, just because for us we knew we needed some certainty, so we could enjoy the pregnancy and we were not going to risk loosing her through an amino. We’ve been very lucky and had great support from all consultants, nurses and midwives and have never been made to feel that the diagnosis was a bad thing. In fact at one scan our consultant described our baby as perfect…I could have kissed him because that was just how we felt.
I’ve purposefully not read any of the press about the testing as I still have to protect myself a bit but I have read many of the posts from parents like yourself. The people who, without even knowing, reassured me through this pregnancy. It’s been my turning point. Seeing you all post pictures proving to the world that Down Syndrome is not debilitating and all the other horrific worlds that have been used, made me so excited to meet my little girl and also show everyone who will listen just how amazing she will be.
I’m not sure that I’m really making much sense but I just wanted you to know that I may only be 1 person but you and Seb have helped me no end!
I just wanted to share an experience I had today at my 34 week midwife appointment.
I was lying on the bed as she worked out what wonderful position my little lady had got herself into. She asked me if I had any more scans coming up.
I said ‘yes!’ She hadn’t mentioned anything about the diagnosis, I was unsure if she had really read my notes so I told her that my baby had Down Syndrome. She looked at me and said, ‘I know’. It was like it just didn’t matter to her, this was just a routine appointment and it made no difference. Which is just how it should have been!
She then said to me, ‘Can I just say that I am so happy that I get to see you today and you chose to keep your baby. I have no idea when testing is going to stop or where it will lead but you and your baby are going to have a wonderful life. You made the right decision.
At that point I cried!
I guess there are people out there in the medical profession who feel the same as us. Today gave me hope!”
So there you have it. The most wonderful message I could have read. I know many of us within the DS community who are speaking with midwives and student midwives, The DSA has been running it’s Tell It Right, Start It Right campaign for several years now and I have been lucky enough to speak in Yeovil, in my role as a mum, and also at The Universtiy of the West of England in a couple of weeks.
Keep doing what you’re doing people. Every single one of you. Living your typical lives and creating little whirlwinds of magic. By being seen and heard and included, you and your children ARE making change. By going to schools and clubs and parties. Parent bloggers, facebook posters, advocates, mums and dads, aunties, uncles, grandparents, friends, carers, professionals – you are all changing things. Super slowly and, at times, frustratingly so.
I cannot wait to “meet” the new arrival in a few weeks time, who has landed herself such a wonderfully open minded, loving and strong mummy! Thank you SO MUCH for sharing your story, YOU have given me hope, and so have the professionals delivering your prenatal care xx