!’ I totally forgot we didn’t know if it was a boy or a girl. After my daughter Polly’s birth and diagnosis of Down syndrome, I appreciated friends and family asking how I was doing. Make a big deal, reminding the parents that their baby with down syndrome is a baby first of all, and babies are irresistible. Babies with Down syndrome are some of the most beautiful babies. ... so I had everyone there send me pictures of the baby. He or she can help you decide whether to seek genetic counseling before you become pregnant again. They were showing understanding and compassion for my sadness and grief. It can come from either the mother or the father. It is not our right to kill our baby because he or she is less perfect in any ways. Just an hour after his birth, Ellie recounts the doctor taking him away to do some heart checks but when he returned, he had some very different news. In the majority of cases, Down’s syndrome is not an inherited condition. She writes, “Eight weeks on, we were still so blissfully happy that we hadn’t yet discussed having a CVS or amnio. “I don’t know why but I felt really in control, really strong. I rang my parents. What are SMO and AFO orthotics and how do they help? If doctor has confirmed 6 to 10 of these signs of down syndrome in infant, that means your baby has down syndrome. So you're 1:43 for Downs. And while I do not write as awesome as you, my sentiments matched with many of yours, just different since I wasn’t carrying her and she is not my own baby girl. He only had a 1 in 40,000 chance of having down's syndrom but then they found that his neck was thicker than normal. I hate that I’m not able to defend my son and say ‘yes we did know. It was hard, very hard, but day by day he got stronger.”. Victoria's son Dylan, now 13, has Down's Syndrome. My daughter has Down syndrome. Even if my baby has fatal abnormalities I will keep her or him until God decides to take my baby away. We’re on our way’. Flag optical illusion shows exactly how colour blindness works…so what do YOU see? “If I have a fear related to people noticing [my son] has Down syndrome, it is that they would assume things about the diagnosis and underestimate him,” Jill explains. I asked over, and over, and over again until the pediatrician on call finished his examination and told me that she did not have Down’s Syndrome. Say when you're 40, you have a fairly high chance of having a baby with down syndrome. I am so scared and overwhelmed. Nothing done before or during pregnancy can cause Down’s syndrome. We have not talking in 4 years. 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! ‘My son has Down’s Syndrome’. But I don't think I'd do a second Amnio. The mom ... Our children who come out made by designer hands and rockin’ designer genes take us on a tour of the ... My baby has Down Syndrome, Now what? The French novelist Antoine de Saint-Exupéry famously wrote, “It is only with the heart that one can see rightly.”This has been my experience with my daughter, Elyse. We'd love to hear your stories of life with Down's Syndrome. “But all that aside, we genuinely just want him to have the support he needs around him, to be happy, to have friends and to feel a sense of worth. “I’ve imagined him being out with his friends at discos and parties and having a girlfriend. There is a definite link with advanced maternal age for reasons yet unknown. The joy she has brought into our lives knocks me off my feet. 0 Like this post Log in Add an account. Look at him. The thought of my baby girl having down syndrome never crosses my mind. Your baby has Down Syndrome, let me tell you, first of all, your life is not over. Well I can't think … He goes to a local primary school in Kingston, where he’s learning to read alongside the rest of his peers. We chose to keep him’. But it was constant.”. Talking to other parents of children who have Down syndrome … In a recent article in Yahoo P arenting, another mother explains her rationale for choosing abortion after finding out she was carrying a baby with Down syndrome.. Sophie Horan was 42-years-old when she conceived naturally after two failed rounds of IVF and a failed IUI. We disagree. “I had to quickly push Henry round the corner to have a sob by the soup aisle,” she says. 10 Things to Say When a Baby With Down Syndrome Is Born When I wrote “ 10 Things Not to Say to a Parent of a Child With Down Syndrome,” s omeone emailed me a day or two later. First Signs of Down Syndrome During Pregnancy. She perfect just the way God made her! After some discussion, I declined the bloodwork. and she knows now that her shock and upset was purely down to a lack of knowledge of the condition and assumptions from years gone by. There is no proper cure for this disorder. In our house, the neighborhood must think the same than yours. “The whole aspect of learning difficulties and slower development became so insignificant when our little boy was strapped up to every monitor imaginable in ICU.”. I would have explained to him that his knowledge and understanding of DS was extremely outdated and completely unjustified. But the blood test I had a 18 weeks came back great. About one baby in a thousand is born with Down's syndrome. And that was that. There they would confirm the condition and have to operate in a couple of months’ time. A blood test looks for what doctors call “markers,” meaning proteins, hormones, or other substances that could be a sign of Down syndrome. So when you want to ask, “My baby has down syndrome, now what? I was offered blood work to see if our daughter had Down syndrome. If a developing fetus has Down syndrome and the condition is not diagnosed during pregnancy, it’s diagnosed at the time the baby is born. I congratulated her anyways, cause she has a son now (she has 2 years old daughter already)...but I really had no idea how to say/react to this news. “On a weekly basis I get asked by someone ‘did you know?’. I used to think that I accepted people with Down syndrome. I looked down, and to my surprise it was a girl! It was like I never had her. That’s really all that’s important in life, right?”. I think my baby has Down's syndrome Chat to other parents-to-be about how best to prepare for your new arrival. My first response was, “Babies with Down syndrome need the same things every other baby needs. Trying to get the tools together to help us start our new life. It wasn’t detected by the routine test at around 12 weeks into pregnancy - though even if it had been, Ellie says she and Tom wouldn’t have terminated. “Some heart anomalies were picked up at our 20-week scan so we were having regular checks to keep an eye on them,” says Ellie. He’s adored by his mum and dad, and is a huge source of entertainment and fun for his two younger siblings, Wilfred, 3, and Beatrix, 1. To inquire about a licence to reproduce material, visit our Syndication site. They are babies, first of all.” My statement is 100 percent true — our babies are just like any other babies, and they need the same items you would use for any other baby. I was only thirty-two years old. My daughter has Down syndrome and I wouldn't change a thing Whether your child receives a Down syndrome diagnosis prenatally or postnatally, it’s often surprising and sometimes difficult news. “I, on the other hand, lay in my hospital bed all night, awake, staring at Henry, with the same sentence going through my head. Just an hour after his birth, Ellie recounts the doctor taking him away to do some heart checks but when he returned, he had some very different news. Even if we have to take care of the baby for life so be it. Okay. But even this has made our family stronger. It was neither negative or positive. “I’ve imagined him having a good level of independence, working at a garden centre - mainly because his dad is such an avid grower - or at a cinema, as he loves TV. Life might not always be easy but it is well worth it. In this video I will be discussing the possibility that one of my twins has Down Syndrome. Need to know more? February 19, 2015, 2:00 AM. My partner and I spent a borderline ridiculous amount of time planning for our expanding family, but we couldn't have possibly planned for our son's Down Syndrome misdiagnosis. Six months later, Baby J. was born. This service is provided on News Group Newspapers' Limited's Standard Terms and Conditions in accordance with our Privacy & Cookie Policy. Ellie says that as horrendous as it was at the time, Henry getting so poorly allowed the couple to get over the news of him having DS very quickly. The Sun website is regulated by the Independent Press Standards Organisation (IPSO), Our journalists strive for accuracy but on occasion we make mistakes. She … Our early weeks and months were helped so much by our local parent-run group 21&Co. This is the time of year where we think about all of our blessings and those things that we are ... Click to share on Twitter (Opens in new window), Click to share on Facebook (Opens in new window), Click to share on Pinterest (Opens in new window). Log in. She was conceived via IVF, at our 12 and 20 week scan she was measuring fine just small although no one said. Today we found out that our baby has Down’s syndrome and I’m absolutely heartbroken. We always are cheering Silvia for everything – and her smile is like a great prize for us. “My mum was as pragmatic as ever. Ellie, and IT manager husband Tom, 34, didn’t know Henry would be born with Down’s. “It definitely wobbled over the coming days and weeks, but I just knew I loved him so unconditionally.”. Henry is a water baby and loves the sea, swimming and pirates, Five years on. Down syndrome is not just a diagnosis. fra92ynb. ", Henry was born five weeks early at Kingston Hospital in 2013, Henry's almond shaped eyes, little button nose and low-set ears were telltale signs of Down's Syndrome to the medics, Grandma Angela Spreckley's first cuddle with Henry, her tenth grandchild, Granny Pam Martin was thrilled to meet her first grandchild, Ellie and Henry don't let Down's Syndrome get in the way of having fun, Henry loves to be out and about with dad Tom. ", Ellie says: “I remember looking straight down at Henry and the little telltale features that had been so apparent to the medics became obvious to me too – his beautiful almond shaped eyes, his little button nose and his low-set ears.”. He’s cute now but it’s going to be bloody awful when he grows up.”. My family said, ‘Well what is it? Scared! “A classic response from my nephew, who was six at the time, was ‘oh yeah, I see lots of people with Down’s Syndrome on Mr Tumble.”. “Having Henry brought our lives into a whole new social network - not just the Down’s Syndrome community but a much wider special needs one. And how actually, even if the future did have difficulties, we'd cope, because we love him! I know that's a terrible thing to say. A newborn baby with Down syndrome often has physical features the attending physician will most likely recognize in the delivery room. ". We disagree. Nothing. Other chromosomal problems that babies can be born with include trisomy 18 and trisomy 13. She went on to explain that babies with Down syndrome, as well as babies without Down syndrome, can have echogenic foci. She spoke to NetDoctor about what it … That means there's extra genetic material on the 21st pair of chromosomes resulting from an anomaly in cell division during development of the egg or sperm or during fertilization. “My father and I were talking about your post about 10 things not to say to a parent of a child with Down syndrome, and we were wondering … We can't abort or give him or her up for adoption because we tried so hard to conceive and we'll love our baby … “Henry has made our lives richer, fuller and in many ways so much simpler. But that day in Asda was the first time she’d had to deal with outright bigotry about Down’s. We did the triple test thing for chromosomal disorders and it came back 1:26,000 for downs and 1:87,000 for Edwards and Pateu. Physical Therapy Exercises for Babies with Down Syndrome, Lewis' Story- Down Syndrome Diagnosis After Birth, 4 Things NOT to Say to a New Parent of a Baby with Down Syndrome, Getting Pregnant Again after Having a Baby with Down Syndrome, Organize Medical Information for Your Special Needs Child, Cooper's Story- Down Syndrome diagnosis at birth, Allie's Story- Down Syndrome Diagnosis (18 months after birth), Best Gift Ideas For Babies and Toddlers with Down Syndrome, Top 5 Speech Therapy tips for Children with Down Syndrome. My baby had Down syndrome, and at 3 days old she was found to be blind from the cataracts that covered both of her eyes. She said, “On our way home, we stopped at a sidewalk cafe. But if the baby has Down's syndrome, I have a disabled child and I don't know how - or if - I would manage.' A part of her I love and cherish. To see all content on The Sun, please use the Site Map. These feelings are all normal. Well my new little Eleanor was born with Down Syndrome. I would have explained how people with DS have very exciting futures now that the correct help and support is offered to them from such an early age. They said this could mean he has down's syndrome. The beauty of her life mesmerizes me. Half of all babies born with the syndrome will have heart defects or bowel problems. Your baby is most likely to have trisomy 21. What we do know is that no one is to blame. Pregnancy And Baby Care Articles Pregnancy Signs and Symptoms. The new Gerber baby with Down syndrome is awfully cute. The love she has brought to our family envelopes us each day. Down syndrome is the most common chromosomal abnormality babies are born with. Down’s Syndrome has quite a lot of abnormalities, some of which cannot be seen. HadTo. I’m 22 and just moved in with my boyfriend and it has finally set in that we are going to be parents. I had a 0.0014 percent chance of having a baby with Down syndrome at my age. Even if we have to take care of the baby for life so be it. It can happen to anyone. It is very doubtful your DD has Downs Syndrome Anon, but I hope this helps and that you do seek help, as it is right to question your baby's development You are not over cautious, so don't let any one put you off Hope this helps Fran xxx. Today, Henry is just as cute as he was back on that upsetting day in the supermarket, and he’s smart, funny and loving. I'd say it's a unique and wonderful experience being a parent of a child with Down syndrome for many reasons. My son has down syndrome we live in Nigeria too. Hey ya'll I have just made this video. This sense of hopelessness is common in mothers (and fathers) of babies with Down Syndrome. But it's mostly determined by age. News Corp is a network of leading companies in the worlds of diversified media, news, education, and information services. “Tom’s mum was just the same. But no.”, Henry arrived five weeks early in April 2013. This extra chromosome results in small stature and low muscle tone, among other characteristics. What bothered me the most were all if the statements pointing out the positives. If some of you watch the franticfraleys you will know that we have a daughter with down syndrome. I'm from December 2012 birth club, but my baby was born at 8 months old. Don’t intrude their privacy, as that would be rude, but if you have an opportunity, look at their hand. Reply. In most cases, for every 100 couples who have another baby, 1 will have another baby with Down syndrome. “She sees Henry and simply laughs about the idea of feeling fearful and sad when all he is, mainly, is a big whirlwind of joy,” says Ellie. Yes it's more challenging but it's also better. While Ellie and Tom try to take each year at a time, they often daydream about what Henry’s future may hold. One that says  ‘ahh that’s why’. These may include a flat facial profile, an upward slant to the eye, a short neck, abnormally shaped ears, white spots on the iris of the eye (called Brushfield spots), and a single, deep transverse crease on the palm of the hand. "My husband and I were very conscious that we weren't able to look after a baby with Down's Syndrome," says Claire, a South African investigative journalist, who was living in Scotland at the time. She was scared for us, for him and so fearful of what the future held.”, She and the rest of Ellie’s siblings sat their own children down to explain about their new cousin Henry, showing them pictures of other children with Down’s Syndrome and talking them through some basic facts. View our online Press Pack. If you have a down syndrome baby, welcome to the best club you never knew you wanted to be a part of. Hey everyone, welcome back to my channel. I think the thing that hurt the most was that my sister could not except that I had a daughter with Down syndrome. This made me cry! People with Down syndrome have an extra chromosome that impacts how a person looks and their ability to think, learn, and reason. Henry as the bear from We're Going on a Bear Hunt on World Book Day, Henry loves Lego and had a blast at Legoland last year, Ready for his first day of primary school, The Martin brothers, Henry and Wilfred, are best friends, One-year-old Beatrix is never far from the action with Wilfred and Henry, The Martin family are a rock-solid team, says mum Ellie, Three in a bed leave little room for mummy and daddy, Henry is a happy, healthy and fun-living little boy who has brought much joy to his family, Mum creates adorable 'carpool karaoke' video for World Down's Syndrome Day, Independent Press Standards Organisation (IPSO). Henry already taught his parents a lot about what really matters in life and the insensitive buffoon in Asda could learn a lot from him too. “I would have explained to him that his knowledge and understanding of DS was extremely outdated and completely unjustified. I had an ultrasound at 22 weeks and my baby boy has a thick neck. Mortified mum stumbles onto son’s homeschooling video lesson NAKED, I’m 19 & my parents track me, read my emails & control my bank account, Bloke’s 'lockdown shop' sparks controversy as trolls rage over long receipt, Mrs Hinch's husband Jamie is unrecognisable in resurfaced reality TV show clip, ©News Group Newspapers Limited in England No. For further details of our complaints policy and to make a complaint please click this link: thesun.co.uk/editorial-complaints/, Comments are subject to our community guidelines, which can be viewed, Tom, Henry and Ellie Martin enjoying family life, Henry's mum Ellie used to worry people were only looking to see his differences, While Henry's heart anomalies were picked up during Ellie's pregnancy, Down's Syndrome wasn't, Henry arrived five weeks early in April 2013. I figured it is high time that this question got a good answer. About 95 percent of people with DS have trisomy … Ellie and Tom’s families’ reaction to Henry’s condition were a great source of strength to them during this heart-wrenching time. He had stopped feeding, still hadn’t done his first poo, had turned jaundiced and started vomiting. So I just quite calling her. So 2 kids out of 100 may have Downs. 1. I got a phone call from my doctor last week that my baby has a 1 in 85 chance of having Down Syndrome. Put it in a percentage. He agreed that I could have the test. We were having very regular scans and assumed Down’s Syndrome was something that was always picked up on right? Shocked! New parents out there that has a baby with Down Syndrome remember Down Syndrome is only a medical term and it does not define your child. He’s our son. Theres a chance I am not really as far as they think & the test could be wrong but Im so scared and upset what am i in for I need support :(. He’s amazing’.”, Ellie says she’s unsure where that composure came from at the very beginning. Without even being aware, our family priorities have shifted and we are so less concerned about the ultimately insignificant things in life. … A baby with Down's syndrome has an extra copy of a particular chromosome – chromosome 21 – in some or all of her cells (NHS 2015a). Henry having Down’s Syndrome clearly didn’t deter Ellie and Tom from having more children - and they decided not to screen for the condition in those pregnancies. “Henry has brought people into my life that have truly become some of my best friends – people who not only understand some of the difficulties we face and challenges we deal with but who ultimately, whether it’s because of shared experiences or not, have the same outlook on life as us, and for that we feel so blessed.”. point out the cute button nose, and the beautiful almond shaped eyes. But still there are things that parents should do to ensure a better life for the baby: Within the first few months after birth, infants should have … I think she may have DS. “She’s honest in saying that she was totally devastated. I remember lifting up his head and just looking at him, saying, ‘This is us Tom, me and you, we’ll be fine. I'm really scared my baby has Down's syndrome. From Karyn, describing the relationships between her four children, including the youngest who has Down syndrome: My daughter with Down syndrome is now 5, She has siblings aged 12, 14 and 21. Henry is a typical four-year-old, who loves pirates, swimming and Legoland. However nobody in mine or his immediate family has downs. “We’ve obviously taken a keen interest in the development of the new non invasive test – NIPT. From which pushchair to buy >, to which birth centre or hospital to choose >, this is the place for you. Helen, 41, from Newcastle, is a GP and mum to three children including 13-month-old Billy who has Down's syndrome. My husband and I feel exactly the same way you do. "The Sun", "Sun", "Sun Online" are registered trademarks or trade names of News Group Newspapers Limited. If doctor has confirmed 6 to 10 of these signs of down syndrome in infant, that means your baby has down syndrome. So far his impact on his siblings has been positive. Sophie’s husband didn’t want her to have an abortion but she was quick to try and change his mind by pointing out all the problems with children with the condition. How are you doing? –Tell the parents how beautiful their baby is! Down syndrome, to me, is part of who my daughter is. This makes a total of 47 chromosomes per cell (NHS 2015a). Related posts: The day a stranger recognized my son’s Down Syndrome Thankful for Down Syndrome (this one has pictures and video of lots of kids) 5 lies about Down Syndrome. Your email address will not be published. Enter your details below for your chance to be featured on The Sun Online. Down syndrome, also known as trisomy 21, happens when a baby has an extra copy of chromosome 21 in some or all of his cells. Babies with Down syndrome may appear ‘floppy’, which normal babies may not display. These tests can also be ordered when the woman has had a baby with Down Syndrome, if the obstetrician observes any changes in the ultrasound that causes it to suspect the syndrome or if the baby’s father has the chromosomal translocation involving the chromosome 21. "There has been talk of the eradication of Down’s Syndrome, the debilitating condition, how people ‘suffer’ from Down’s Syndrome. The thought of having a baby so young was scary enough but I don’t know how we are going to deal with this. There is a genetic factor, of course. His words were: “I’m very sorry to say we think your son has Down’s Syndrome. She would talk about everything else but her on the phone. I thought to myself… my baby has Down syndrome. This is actually a phrase that I used in Google when I learned of our son’s diagnosis. A baby without Down's has 46 chromosomes in each cell, having inherited 23 chromosomes from her mum and 23 from her dad. Down’s syndrome is caused by the presence of an extra chromosome in a baby’s cells. This diagnosis uses a … After all, children with Down’s Syndrome have more in common with all other children than differences. My son with severe LD's has definitely changed life for the better for our family although I suspect people looking in find that hard to believe as he is so far from society's idea of normal. Its a 6.5 and the doctor said it is suppose to be a 6. My family on the other hand thinks that people with down syndrome are less worthy of life and are weirdos to be looked upon. Don’t worry. I was having a baby with Down Syndrome! Here are 12 things you may experience if your baby has Down Syndrome. (there is a great post here that will explain), How One Couple Became Stronger After a Down Syndrome Diagnosis, Special Needs Parents; I felt sorry for them before my son was born, “I’m So Proud” A Word about our Children with Down Syndrome, Down Syndrome- What I Would Have Told Myself in the Beginning, The day I talked about my son’s Down Syndrome diagnosis without crying, October Down Syndrome Awareness Facts- Day 2, October Down Syndrome Awareness Month Facts DAY 1, Terms of Use, Privacy, Copyright, Disclaimer. Off my feet in with my boyfriend and it came back great s why ’. ”, arrived... Being aware, our family priorities have shifted and we are so less concerned about the ultimately insignificant in. Thing to say to when a baby ’ s syndrome is caused the... Son Dylan, now 13, has Down 's syndrome Chat to other parents-to-be about best. 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