tag:blogger.com,1999:blog-648323027563656557.post6393294963582942040..comments2024-03-11T11:53:06.395+00:00Comments on Downs Side Up: What to Say When a Baby is Born with Down's SyndromeDowns Side Uphttp://www.blogger.com/profile/12806066168756340802noreply@blogger.comBlogger82125tag:blogger.com,1999:blog-648323027563656557.post-90002709967561532852023-08-16T07:13:32.066+01:002023-08-16T07:13:32.066+01:00This post is a great resource for promoting inclus...This post is a great resource for promoting inclusivity and empathy. Well done!andrewwatchpartyhttps://www.youtubeparty.com/noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-10991796072188164572023-08-10T10:33:03.282+01:002023-08-10T10:33:03.282+01:00Thank you for sharing such an important and inform...Thank you for sharing such an important and informative post. It's crucial to educate ourselves on what to say and how to respond when a baby is born with a disability.lakshayadblockerhttps://www.huluadblocker.net/noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-90177733695421632292023-07-13T11:29:00.310+01:002023-07-13T11:29:00.310+01:00Thank you for sharing such an important and inform...Thank you for sharing such an important and informative post. It's crucial to educate ourselves on what to say and how to respond when a baby is born with a disability. Your suggestions on offering congratulations, acknowledging the baby's unique qualities, and providing support to the parents are valuable reminders. This post is a great resource for promoting inclusivity and empathy. Well done!Sumithttps://www.trippybug.com/tallest-waterfall-in-the-world/noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-60438700653005097842023-01-10T22:55:05.865+00:002023-01-10T22:55:05.865+00:00What bothered me when we welcomed out son with DS,...What bothered me when we welcomed out son with DS, is that NO ONE literally no-one didn't congratulated us! And one neighbour said to me "Why you gave birth to an idiot?" Which I replied "We should ask your mother!".<br />But I have to say that the words of the physiatrist doctor were something that I will never forget. When we went on examination when he was 2 months old, she told me "You have probably read about Down syndrome and how it occurs- we have 3 chromosomes, mother, father and someone else". That words gave me completely different point of view- he is our blessing, not burden! God gave him to us so we can be better persons. As he grows, we are growing with him, and I wouldn't charge anything! He is a perfect gift for this imperfect world.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-77861998737068966832022-03-01T19:22:46.000+00:002022-03-01T19:22:46.000+00:00I am 5th month pregnant. The baby is diagnosed wit...I am 5th month pregnant. The baby is diagnosed with Down. I was called when the positive result came and were told to terminate immedeatly. I refused to do so, o the doctors called repeatedly and explained how the baby will ruin my life! It is unbelievable...the baby has no other visible physical damages other than that diagnosis. So i do not see why i shiuld kill it!Anonymoushttps://www.blogger.com/profile/04240267088865865168noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-73451856793399276642013-11-24T09:49:06.759+00:002013-11-24T09:49:06.759+00:00Sorry that this is the first time reading this, I ...Sorry that this is the first time reading this, I missed it at BritMums and you have moved me deeply. Your blog is so vital to so many, it angers and saddens me how reckless and insensitive healthcare professionals can be when you most need them. This post will help so many. Thank you for sharing xHonestmumhttp://www.honestmum.comnoreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-12573227018203656062013-10-02T13:01:25.333+01:002013-10-02T13:01:25.333+01:00Thank you Tania xThank you Tania xDowns Side Uphttps://www.blogger.com/profile/12806066168756340802noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-31471195886900418052013-10-02T13:01:08.545+01:002013-10-02T13:01:08.545+01:00Lovely to be in touch. Your speech was wonderful. ...Lovely to be in touch. Your speech was wonderful. H xDowns Side Uphttps://www.blogger.com/profile/12806066168756340802noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-42432385530757905212013-08-25T12:19:19.724+01:002013-08-25T12:19:19.724+01:00So nice to hear from you on my blog, Hayley! You m...So nice to hear from you on my blog, Hayley! You might be interested in a TEDx talk I did - Down Syndrome makes a surprising appearance in it! http://www.youtube.com/watch?v=YftMFOcBcBA<br /><br />JoJo Chopra McGowanhttps://www.blogger.com/profile/15663017534433599497noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-86123425121739491732013-08-24T20:57:48.119+01:002013-08-24T20:57:48.119+01:00Love this post. Love your blog. The title is brill...Love this post. Love your blog. The title is brilliant!<br /><br />I am in India where I run a foundation for kids with special needs - inspired by my own daughter. (www.latikaroy.org)<br /><br />So happy to have discovered you.Jo Chopra McGowanhttps://www.blogger.com/profile/15663017534433599497noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-86667751765607204172013-08-21T23:52:36.558+01:002013-08-21T23:52:36.558+01:00Hayley, you and Renata are my very favourite blogg...Hayley, you and Renata are my very favourite bloggers and this post proves why. It is an exercise in what blogging is all about, pure and simple: sharing your story and in doing so, inspiring and educating at the same time.<br /><br />And you're right, Natty above all, looks just like you and her sister, beautiful inside and out!<br />Tania Tirraorohttps://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-81054638906452698132013-08-11T23:42:45.478+01:002013-08-11T23:42:45.478+01:00Our Gorgeous Elodie arrived in March and it took 2...Our Gorgeous Elodie arrived in March and it took 2 - 3 days before anyone mentioned having a chromosome test, it wasn't obvious. Elodie looks very much like her brothers and they adore her! They have been fantastic as have our friends and family. It brought all of our family closer still. Elodie had to have a heart operation in Bristol to close a large vsd and since then she has been doing so well, we had her Christening last weekend and such a special day. She loved it! Her God mum named a star after her, for her Christening present so very special, just like her. She is a little star and we are all very proud of her and pleased she is in our lives. <br />It is quite amazing how many people ask if you had tests during pregnancy we didn't as it would have made no difference to our decision. She is a gift and we are very blessed ! Thank you for your blog it has really helped and all you are doing to help change people's perceptions of ds. carrotcakehttps://www.blogger.com/profile/09374967595084899005noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-70760944538265846602013-05-22T16:59:24.380+01:002013-05-22T16:59:24.380+01:00Reading this had had me in tears, all parents are ...Reading this had had me in tears, all parents are blessed as children are a gift however they are 'made'. My youngest for example is an accident prone, crazy baby but I would never change her and the insinuation people make that as parents of a baby with downs syndrome you would want to change your precious child is disgusting. My little sisters best friend at primary school has ds and this year (age21) he will be graduating from university, he has a girlfriend and is in a band, all things people assumed he would never do. Keep up the good work xAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-15099317983333733302013-05-21T10:33:19.637+01:002013-05-21T10:33:19.637+01:00as ever a great blog, I do love you so for helping...as ever a great blog, I do love you so for helping so many families I just wish you were there at the start of my journey 10 years ago I am the proud muma of a little boy who is nearly 10 who we love to bits and would never change him once again I salute you Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-60564561382644027942013-03-30T19:39:07.960+00:002013-03-30T19:39:07.960+00:00It's a great programme isn't it, featuring...It's a great programme isn't it, featuring a couple of our friends. I love that the narrator also has Down's Syndrome HDowns Side Uphttps://www.blogger.com/profile/12806066168756340802noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-86601941231622234972013-03-28T19:53:58.665+00:002013-03-28T19:53:58.665+00:00I saw this program on the bbc iplayer and think an...I saw this program on the bbc iplayer and think anyone who has a child with Down's syndrome (or works with them) would really benefit from seeing it - especially before making generalised comments:<br /><br />http://www.bbc.co.uk/iplayer/episode/b01qymnx/My_Life_Series_4_Breaking_Free/Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-13496674425627368082013-02-07T23:25:14.039+00:002013-02-07T23:25:14.039+00:00When I had just given birth to my daughter with Do...When I had just given birth to my daughter with Downs Syndrome, I remember my community midwife say to me ' dont worry shes lovely really' xAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-55111867467356543932013-01-24T22:44:42.690+00:002013-01-24T22:44:42.690+00:00OMG just read this and am absolutely astonished by...OMG just read this and am absolutely astonished by the 'p.s' comments. I cannot believe people can be so horrid! We were told with my first born that we had a 1 in 100 chance of Down's and I faced some looks/criticism when I immediately refused any tests. Why is it that we are 'abnormal' because we are not bothered about such things, happy in knowing that we are blessed with our children no matter what!? I was then asked the morning of my c-section (emergency with pre-eclampsia) if I'd been told about Edwards syndrome, when i said no and asked the obvious, the doctor simply stated that it would mean my child would probably die within months of birth! Fabulous bedside manner. However have to say no matter what god had in mind for me and my child (born perfectly healthy, although teeny tiny small at 3lb 8oz, SCBU for 4wks - now happy mischievous 7yr old) it would only have been love and joy I would have had and did feel #withoutashadowofadoubt Shame we can't say the same for others. Fay aka @HenFredandFelic xAnonymoushttps://www.blogger.com/profile/16326788867315088995noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-65336618346113680552012-12-04T14:06:02.106+00:002012-12-04T14:06:02.106+00:00I was doing a search on the web for Visual Timetab...I was doing a search on the web for Visual Timetables and then started reading your article about what to say when a friend's baby is born with DS and then carried on reading ... I just wanted to share my story: we had the NHS blood test and were told we were low risk. The day after our beautiful baby daughter was born a whole team of people suddenly surrounded my bed and the paediatrician examined my baby. The paediatrican had the most dreadful bed-side manner: she asked in an aggressive way if we were concerned about our baby (thankfully my husband was there with me) and we said "no" but that I hadn't managed to breast-feed her yet. She said "so you're not concerned" (in the same manner) and then she just blurted out "your baby might have Downs". There is never going to be an easy way to tell a parent this news but this lady's way of saying it was awful. She then left with her team of people while we were left in shock. One man stayed behind to see if we were OK. As you can imagine we were not. We were told the only way to tell for sure was for a blood test to be taken but they couldn't take the blood that day as it was a Friday and the lab was closed all week-end so they couldn't do the blood test until the following Monday!!! We pressed them and they eventually took the blood that day (our baby was so small it took about three different Drs/nurses to take the blood sample). We then had to wait 8 days for the result. I had such trouble breast-feeding and our baby kept losing weight so we were in hospital for 7 days. All the other staff I'm glad to say were lovely except they were so busy they didn't have time to read our notes so didn't know that we were waiting to hear whether our baby had DS or not and at one point I just exploded with emotion as I was in such a state. Eventually just after we got her home we got the 'phone call that everything was OK. I had fallen in love with our daughter so whatever the news was there was no question about giving her up. As it turned out when she turned one and half another paediatrician diagnosed her with Global Developmental Delay, low muscle tone and hypermobility but we don't have a proper diagnosis for her. She is now 7 years old but is developmentally about 2-3 years old. She also has a non-curable stomach condition called Cyclical Vomiting Syndrome which was diagosed about 2 years ago. So it has been a roller-coaster ride right from the beginning! I was touched by what other people had written as a lot of it rang true with what I have experienced with having a disabled daughter. She is our only child and I love her more than words can say and even though life is very hard a lot of the time I know I am blessed to have been given a daughter. I wish I could stop her from vomiting as that is truly horrible but otherwise I wouldn't change her in any way as then she wouldn't be her. I have met so many wonderful professionals (excluding the dreadful woman mentioned above) and other parents along the way who I wouldn't have met otherwise. It's a hard road that we follow and people don't always know what to say (if I hear "but it could be so much worse" one more time I will scream!). Sorry I've gone on and on but it's not a short story.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-63194357557574204372012-11-26T19:00:18.523+00:002012-11-26T19:00:18.523+00:00I just watched your video on the Down's Syndro...I just watched your video on the Down's Syndrome Scotland Facebook page. Well done - what great advice! My younger sister has Down's Syndrome and I remember asking my Mum what I should say to a friend who had just had a baby with Down's Syndrome and she said, "Say CONGRATULATIONS on the birth of your beautiful baby, just like you would to any of your friends!". I remember thinking "Of course!" and wondering why I had even had to ask her, but I didn't want to say the wrong thing at a sensitive time. I couldn't ever ask for a better sister - she is caring, kind and really funny (in fact she has a really wicked sense of humour!) and a fantastic Auntie to my kids, who all adore her.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-83509529354666918332012-11-13T22:54:52.581+00:002012-11-13T22:54:52.581+00:00I knew about my daughters diagnosis prenatally , t...I knew about my daughters diagnosis prenatally , the attitudes of the professionals was to say the least very negative. The results phone call was 97.5% certain for downs, there is a slot available 09.30 monday for termination shall I book you in, call was on a friday. Hours after having given birth a young midwife sat next to me telling me if I had changed my mind at any time,,even in the last week or two it could have been sorted,, I couldn't believe me ears stared bat her and she repeated "OH YEAH we are not supposed to discuss it but it happens" how I didn't murder her I'll never know. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-46004636927934400912012-11-13T22:21:38.788+00:002012-11-13T22:21:38.788+00:00It was. Thank you :)It was. Thank you :)Downs Side Uphttps://www.blogger.com/profile/12806066168756340802noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-51046598322841805842012-11-13T22:20:49.915+00:002012-11-13T22:20:49.915+00:00Darling Kathryn, this is not right. You should all...Darling Kathryn, this is not right. You should all have been together. That said, you will pick yourselves up and work through the anger and frustrations of how you were told, as we did. You will channel it into change for others.<br />I am working flat out to change the way things are done in hospitals, to eliminate this kind of poor start to family bonds. Please stay in touch. I bet your daughter is absolutely gorgeous xDowns Side Uphttps://www.blogger.com/profile/12806066168756340802noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-30512689924973019262012-11-13T22:17:34.555+00:002012-11-13T22:17:34.555+00:00thank you for writing some of the things I have fe...thank you for writing some of the things I have felt since my daughter was born in April with DS.<br /><br />My partner and I were told seperatly 36 hours after birth the DS diagnosis, he had to take our little boy to the playroom as he was getting too noisy to hear the Doctor, he came back to find me in tears and I took our son tot he playroom, no offer of a nurse to look after him whilst the doctor spoke to us. <br />My partner then had to go home and I was left crying in a side room, no midwives came to check on me.<br />its something that will stick with me forever how we were giving the diagnosis. when I am stronger I will do something to make sure this doesnt happen to families in my hospital againAnonymoushttps://www.blogger.com/profile/04497711073168528010noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-44366292326812363912012-11-13T22:13:07.183+00:002012-11-13T22:13:07.183+00:00thank you for writing some of the things I have fe...thank you for writing some of the things I have felt. My daughter was born with DS in April this year, we didn't know till 36 hours after birth that she had DS and my partner and I were told seperately and I was left alone in my room to cry, without anyone to talk about it, not even someone offering the usual 'lets have a cup of tea' kind of moment.<br /><br />Its one thing that will stick with me forever and when I am strong enough will raise these issues with my local hospital.Anonymoushttps://www.blogger.com/profile/04497711073168528010noreply@blogger.com