Chloe at 6 months
In August 2011 when I was 36 weeks pregnant with my second daughter, Chloe, my whole world fell apart. At a routine ultrasound, it was discovered that she had a serious heart defect that would require surgery. This was bad enough but upon further investigation, it turned out that this particular heart defect was common in babies with Down syndrome. This was a huge shock because I had come so far in what I thought was a normal, healthy pregnancy.
To confirm this diagnosis, I had an amniocentesis. Before the procedure, I was given another ultrasound, this time by an Obstetrician who again told me that there was nothing he could see to indicate that my baby had Down syndrome. I was relieved. Two days later however, the results of the amniocentesis came back and confirmed otherwise. Despite my low risk and all the ultrasounds being clear, my baby had Down syndrome.
I felt so many awful feelings at the time of Chloe’s diagnosis. The grief was indescribable and I found myself thinking, “What the hell?” If this had been discovered before 20 weeks, I would have been offered a termination but now that it was too late for that, I was instead handed information on Down syndrome and told that if I had to choose a disability for my child, this would be the one. That my baby would be beautiful and happy and loving and everything would be alright. This was so difficult to make sense of and my head was spinning!
Chloe recovering from heart surgery
My knowledge of Down syndrome was very limited and what I already knew scared me. I wanted to learn more so I searched the Internet every night and read everything I could find. I looked at photos, read stories and information about the potential health issues and physical characteristics that my baby may have. I was frightened for my family and especially for my 4 year old daughter, Emma. My heart broke when I thought about what this would mean for her. She was so excited to be having a baby sister but now I worried how this would impact her life. Everything was going to be so different. I expected the worst and it hurt. It hurt so bad. This was not what I wanted for myself, my husband and especially not for Emma.
Finally the day of Chloe’s birth arrived. This moment was one that I had been so afraid of. But the whole experience of seeing her for the first time was not scary at all. It was beautiful and unique and amazing. Through all my grief and sadness, I had somehow forgotten one very important thing – Chloe is a baby and she is mine! She looked straight at me with her eyes wide and I found myself smiling. She was beautiful. I said hello and covered her little pink face with kisses. I am your Mummy!
It is routine for expecting mums to undergo a screening test for Down syndrome and other less common chromosomal abnormalities during the first trimester of pregnancy. The problem with this screening test is that it does not provide a definitive answer for Down syndrome. It only provides a risk. I have learned that mothers can be given a risk of 1:14000 and still give birth to a baby with Down syndrome. Likewise, a mother can be given a risk of 1:3 and their baby will be born perfectly healthy. The only test that can provide a 100% accurate result is an amniocentesis. This invasive test, however, has a high risk of miscarriage so it is only offered if a mother’s risk of Down syndrome is higher than 1:300.
I do not blame the Sonographers or my Obstetrician for not picking up Chloe’s Down syndrome. They can only see what is on the screen and I understand now that not all babies with Down syndrome have these soft markers. I just wish this had been made clearer at the time of my screening.
Chloe with her sister Emma
As I write this, I can feel the anti-abortionists ready to pounce but in order to make my point, I will be honest and say that if I had have found out early in my pregnancy that Chloe had Down syndrome, it is highly likely that I would have terminated. This decision would have been made out of fear and ignorance. Throughout the screening process, very little information was provided about Down syndrome and the brief information that I received was rather negative. Down syndrome was portrayed as an unwanted condition. There was certainly no mention of it being beautiful and loving and wonderful. The majority of parents who find out early in pregnancy that their baby has Down syndrome sadly do terminate. Maybe there wouldn’t be so many terminations if people were better educated.
Chloe is 7 months old now and I am thankful that we weren’t given the option to terminate our pregnancy. If we had chosen to, terminating her would have been a real tragedy. Having a baby with Down syndrome is nothing like I thought it would be. Chloe is so beautiful and she surprises us every day. When she was 3 months old, Chloe survived open heart surgery and now that she has recovered, she is growing and achieving her milestones which is so amazing. When I look into her beautiful blue eyes, I know she is meant to be here with me.
It is early days yet and I still have so much to learn and discover. I am certainly still fearful of the future, but this fear has so far been much worse than the reality. There is nothing I can do to take away that extra chromosome from Chloe but what I can do is enjoy today and keep an open mind. There is a whole lot of help, opportunity and acceptance out there in the community for those with Down syndrome so already, Chloe’s future looks brighter than I could have ever hoped for.
On the 21st of March, it is World Down Syndrome Day. Seven months ago, at the height of my grief, I would never have imagined myself saying this but I am really looking forward to celebrating my precious Chloe and giving thanks to all the amazing things she has brought to our lives. She makes me want to be a better person and to live a better life and I am very grateful for that.
Suzanne Loveland is a mum of 2 beautiful daughters and she runs her own marketing business, Creative Elements from home. Suzanne is also an aspiring writer and has recently started a blog which you can read here.
Comments
98 Comments so far
I have a 24 year old son with DS. He has led a wonderful life. Challenges like all kids growing up, but we loved and supported him. People often compliment him and me on who he is. The love they have is a blessing. Be vigilant and trust God has a plan greater than you can know. He has a plan to prosper us,not to harm us. We have lived trusting his plan and accept everyday as a gift and a lesson in grace.
loading...
Thank you for your beautiful story. I feel much better after reading it. I am writing from Mongolia. My 4 months old baby girl has a down syndrome too. She is our first baby. My husband and I both 24 years old. But I love my little girl and will wipe out fears about her future. Loving her every day and hoping in good things. She is adorable and godlike loving. Also we are waiting for the heart surgery. But I hope everything will be great. I am sure that everything will be great in your family. Wish your family all the best. Especially for Chloe.
loading...
Love your post Suzanne. As you know my gorgeous 2nd son Master Jax is about to turn one next month and like Chloe has ds. First and foremost our bubba’s are people first. DS is and should be a smal part of them. I have to be honest and say I refused the amnio as he was going to be my son wether he had ds, cystic fibrosis or whatever! What I dont understand is ppl say not to judge them when they abort their a baby with ds YET arent they judging the unborn which because they have ds? Anyhow 2nd best thing I ever did having my baby son after having his older brother. He is loved and wanted and such a blessing to our entire family and all of our friends! Hugs to Chloe xx
loading...
I am currently pregnant with my 3rd child and though we got the 12 wk scan for dating (and to see that precious heartbeat!) we declined all the (recently introduced?) extra testing like blood tests etc that calculate downs risk… as although it would be good to know for preparedness, it wasnt a huge deal to us as we know we would not terminate if the child had DS or anything else (we are also pro-life so that made it easy i guess). i think its natural to feel shock/grief/all manner of things at an unexpected diagnosis… and in that state, I can see why it would be so tempting to abort and not deal with that fear as Suzanne mentioned. But I must admit my heart does grieve for all those babies with DS who arent given the chance to show their parents, their siblings and the world just how much they have to offer. Anyway, we pray for good health for our unborn child but also the strength to love and protect them no matter how they come into this world… just like any child, there are no guarentees about their life except that they are ours and we we will always love them!
loading...
There definitely needs to be more information available. I found out when I was 14 weeks that my little boy had Down syndrome as well as having omphalocele. I had two days to make my decision because of the laws around abortion and another 5 days waiting for the procedure. All the staff involved were extremely helpful and supportive but there was so little information available and any that was there was hard to read through the never ending tears. My family lives on the other side of the world and I later found out I would not have been able to become an Australian citizen had we gone ahead with the pregnancy.
That was almost 7 years ago and it still hurts like it was yesterday. I feel like telling you I admire and respect you but it sounds hollow. I do wish you lots of love and luck not because I think you will need it but from a selfish point of view you see I love hearing stories like yours so thank you for sharing it. Yes they upset me as they remind me of what a precious thing I gave up but they also bring me a sense of peace that I can’t quite explain.
Does this make me anti-abortion having experienced the pain it can cause? NO I believe in the right to choose. I made my choice at a moment in time that I can not return to or change.
It’s a choice I refuse to be embarrassed about; there is nothing any one can say that will make me feel better or worse about my choice and the impact of that choice. I just wish there was better information available to people to make sure it’s an informed and considered decision, maybe if we are able to stop judging people’s decisions and choices it will lead to open discussions which will assist.
loading...
I LOVED the post! Very interesting.. I love innwkog stuff when it comes to food. My friend was telling me the other day, about what goes in a certain dessert (ma ra7 agolik, I’ll make u guess ;p) and my jaw dropped, looking at her in astonishment! I was going NO WAY! lol ;p Ever since she told me, I go to bed wondering about how fascinating it is ;p Again, great post!.. (peanut butter and watercress? Odd combo ;p)
loading...
Thank you for sharing. We too have a beautiful boy who was born with down syndrome. We did not know prior to his birth and the moment he arrived the first question my partner asked after ‘was he a boy or girl’ was does he have downs syndrome. In lots of ways I am glad we didn’t know, having him now I can’t imagine making a choice to terminate, although I will never know what I would have done if I had known. The first year was a blurr, with multiple surgery, appointments and coming to terms with the grief of not knowing what this meant for Liam and his life, or for us. To be honest the grief still comes in waves. He is now 17 months and a beautiful boy with so much determination and joy. The one thing that still to this day amazes me about Liam is his ability to laugh despite all that he has been through. Saying this, Liam has am amazing personality and is not afraid to tell you what he wants, or doesn’t want as the case may be. It humbles me to know that my beautiful boy provides me with the gift of enjoying each moment as it comes. I can’t imagine my life without him and I too feel incredibly grateful for the gifts he brings into our lives.
loading...
I read your piece earlier in the week and it really touched my heart. But I must say, I keep catching a glimpse of Chloe’s gorgeous smile in the thumbnail photos on the homepage and it just makes me smile every time. What a gorgeous little girl she is!
loading...
Chloe is sooooooo CUTE!
loading...
WE have loved & laughed through 11 wonderful years with our third child Harry. Like you we discovered late, the diagnosis of D.S. -actually day 5 after he was born. I am sooo pleased not to have been diagnosed earlier & shudder to think how different our lives would now be. Our family is truely blessed to have our world opened to what is “different”. Yes , there are the tough moments(Harry was diagnosed with Leaukaemia at 2) but these are easily forgotten when ever he is near. Congratulations, you are now one of the lucky few.
loading...
What a beautiful story. Thanks for sharing.
loading...
Can I just say….
Please don’t refer to chicldren who have Downs Syndrome as ‘Downsy’ or a ‘Downs kid’. We don’t call a child with cancer, ‘Cancer’, nor do we call a kid with a broken leg ‘Broken Leg’. They are a child, first and foremost. Don’t let differences be the thing you identify people by.
Also, I grew up with two close friends with siblings who have Downs Syndrome. I was genuinely surprised, when it came time for us all to start discussing kids, that my friend who had a very high functioning sibling would abort a baby if they showed the signs, but my other friend who’s sibling was always ill and needed constant medical attention would not even think twice about it.
Many blessings to you, Suzanne. You write with such love- it is beautiful.
loading...
It’s Down Syndrome, not Down’s.
loading...
I think either is acceptable, but Down’s Syndrome has always seemed more correct to me, as the condition was named after John Langdon Down, the doctor who first described the syndrome.
loading...
My understanding is that Down is preferred because Down’s makes it sounds like people with it ‘belong’ in some way to Dr Down, or that he is the focus of the condition.
loading...
Fair enough – thanks for clarifying.
loading...
Thank you for writing this. Your little girl is beautiful (that smile!), and I love that you are facing your fears head on. Best of luck with you and Chloe and your family!
loading...
Having undergone an abortion when I was about 19 really played with my head for about 16 years, until I semi-forgave myself. Has also turned me anti abortion. Last year aged 42, I had a positive result in my maternal serum blood test. I believed it was a false positive from the start as my ultrasound showed a thinner nuchal translucency (at back of neck) than my daughter’s (and she does not have DS). My CVS test took 2 attempts as I refused to keep apppointments. I was terrified and didn’t want to risk harm to my unborn child. Finally, I relented and went ahead with the test. I just wanted to know where we stood if it was DS. My partner wanted me to abort if it was DS. I was not prepared to abort, even if our son had DS. The main thing was that I just wanted to know so I would not be shocked at time of birth. Our son is fine. Your daughter is absolutely gorgeous. Congratulations on a beautiful child. Enjoy her. Each life is individual, beautiful and precious.
loading...
My family grew up with Downs – my mum’s sister Janice was DS – and it’s nothing to be afraid of. For us, the biggest issue was the impact on my grandmother (mum’s mum) as we lived in a small town and there was very little support for her – she gave her life to Janice. But Janice gave so much love to us all, it just didn’t matter. Sadly Jan died in her early 40s but until close to her passing lived a happy, healthy life. For all of us kids our special auntie taught us many more life lessons than other adults had done. It was great. Having said that, I understand how tough it is too – the village is required to raise these special kids.
loading...
What a beautiful little girl, that smile is just adorable!!
loading...
Let me just preface this by saying that I’m 23 with no kids and no plans to have any until I’m at least 30. So, I’m viewing this from the perspective of a total outsider to parenting. However, should I one day find out I’m pregnant with a DS foetus, I genuinely have no idea what I’d do. I’m aware this is horrible of me to admit – I wouldn’t express it at all, if it weren’t for the anonymity of the internet. That said, if I had a child with an intellectual disability, I’m afraid that maybe I wouldn’t love it enough. I’m worried that I’d resent him/her, or favour my healthy kid(s) over the one with DS. I’m not the most patient, maternal or nurturing person. I can’t help but feel if I were the more mumsy type, I wouldn’t doubt the ability of my maternal love to overcome all obstacles. Moreover, I feel like I could cope with a child with a physical disability, such as deafness or cerebral palsy, but one with an intellectual disability would just be that much more… heartbreaking?
So, basically – I can’t help but wonder if terminating a DS foetus would be better than risking inflicting a lousy mother on a child already in need of more loving care than most. I don’t like that I think these things. I respect people with Down Syndrome, yet on the flipside I have fears about whether I could be as accepting when it came to my *own* family. I feel like a hypocrite, being anti-disability prejudice on the one hand, yet harbouring all these secret fears on the other hand. Has anyone else felt the same? Did you (either as the parent of an intellectually disabled child, or in general) end up discovering that they were just worries and not an accurate prediction of how you’d really feel/behave?
If the time ever comes, I want to know I’ll make whichever choice based on objective, careful consideration. Not out of an uncomfortably eugenicist-esque fear of “imperfect” offspring (or due to reacting with horrified denial about having any such thoughts).
loading...
Cat, motherhood’s middle name is ‘worry.’ It goes hand in hand with the job and it’s a BIG deal. I worried about each baby from the moment I found out I was pregnant and thirty years later I still worry and I’ve worried about something or other every day in between. A fair bit of the worry is about imaginary scenarios but sometimes life throws a real grenade and everything shatters. Life is beautiful but it’s also a brutal bitch. The most important thing to remember is to reach out and accept the love. Someone has posted a link much further down the blog that is such a beautiful read. Try to find it if you can.
Back when my Nan was a young mother she lived next door to her Mum and her sisters and aunts all lived in the same road or one over. It wasn’t unusual to have so much support within easy reach but we don’t have that so much now and we can sometimes feel that we are taking on the world and our troubles all alone. Remember, if you have a family, you can get through anything. When you can’t walk, they’ll carry you. And, of course, for those who believe, they have their faith.
Every baby brings its own love with it. Love never has to be divided, it simply multiplies. It is incredibly rare for a mother to not have an unbreakable bond of love for her children – even when they are smelly teenagers that you want to kill in a violent display of rage.
Always remember that no child is perfect but some with disabilities are more perfect than ‘normal’ children.
You’ll be OK. You’ll know what decisions to make when you need to make them. You’re strong enough to face anything but I hope you don’t have to find that out. Be brave, go forth and multiply … and try not to worry too much.
That is if you choose to have children at all – which is a valid choice in itself.
loading...
‘Life is beautiful but it’s also a brutal bitch’.. so. true.
loading...
Hi Cat. What you have said is exactly how I felt before I ever had kids. I was never a very maternal person and having a child with special needs was something I never wanted or thought I could cope with. I wasn’t so sure I could even cope with a “normal” child before I had my first daughter. I can tell you from first hand experience though that when a child with a disability is your own, all that changes. You see them as your child first and foremost. It’s amazing how becoming a mother actually changes you. I am certainly proof of that!
loading...
Cat- you are 23. My 23 year old self is so different to the 30 something mum I am now. Don’t stress. When u become a mum, you really do love your children no matter what- perfect or imperfect. One of my children has autism and if anything it has made me love her more and be more protective. In saying that i love my children equally. Theres no resentment- they didnt ask to be born with a disability. You really celebrate the things they can do instead of the focusing on what they can’t. As much as I wish my child didn’t have to deal with autism I wouldn’t swap her for anything in the world. Motherhood makes you mushy!!!!
loading...
Cat I find your comment so honest and interesting. I am a person who was born with a facial defect that with heaps of surgical and dental intervention in childhood and a few tweaks in adulthood has resulted in an excellent cosmetic result. I was also fortunate enough to be born with a good intellect and have always excelled academically eventually becoming a doctor. Due to my personal experiences I always thought that if I had a child with a “problem” I would want that to be a physical rather than an intellectual disability. I always said (quite arrogantly I think in retrospect!) that as long as my child’s brain was ok I could handle it. Lo and behold 2 years ago at the age of 41 my much wanted second child (my daughter Chloe!) was born with DS. What a shock! My Chloe is amazing – she is absolutely perfect physically. Unusually for a child with DS she has absolutely no medical problems and is thriving. She is also incredibly beautiful. Fortunately she also is intelligent fiesty and delightful. To answer your fears I have NEVER been so in love in my life! She is divine. Her DS is an integral part of who she is but it doesnt define her and I have discovered that my love for my children is not conditional. My love for Chloe is at time raw and painful and tinged with worry and fear but it is never less than what it would be if she didnt have that extra chromosome. All I can tell you is that when you become a mother you wont discriminate between your children either. You will love them for who they are not for what they do or dont have. Good luck and get on with it. Its fantastic!
loading...
While a lot of Down syndrome kids are the very happy, loving, gorgeous individuals described here and in the comments, I feel the need to also raise some of the negatives, so that there is a balance in information as to what to expect with a Down syndrome child. Working in a hospital, I admit that I see a biased representation of this group, ie. those that are very ill. But that is just the point, having an extra chromosome can bring with it a myriad of health issues, including Acute Myeloid Leukemia, the heart problems (that often require many surgeries), blindness, etc. Another fact that is rarely mentioned is that these babies often do die in utero. Some women can not face the trauma of delivering a late term deceased baby, hence they may be better off for their own mental health’s sake to take the termination option. All these factors need to be considered. Sorry to be such a negative Nancy (I am not a troll and am really sorry if I have upset anyone), but the public perception of the happy, bouncy Downsy kid is only one possible outcome with this diagnosis. All this information, the positives and the negatives, must be given to the couple when given a prenatal diagnosis result, preferably by a caring, unjudgemental and non-leading genetic counsellor. I was touched by this beautifully written article and the similar stories in the comments, your children are all beautiful and are souls to be treasured, but I do feel you guys are the lucky sub-section of this populaton.
loading...
I have meet a lot of babies in the last 1 1/2 yrs since my son was born and the majority have been healthy happy kids. Some have had heart problems but surgery has fixed them up. This day and age people with Down syndrome have an average life expectancy of 60yrs old. When my son was born we were given a whole list of possible health problems which stressed the hell out of me for those first few months. I was more concerned that he might have a heart problem than he had Down syndrome. He had NO health problems. I now wish I didn’t stress so much…
loading...
As a Doctor who works in the same hospitals I agree there is a very serious side to DS which does involve medical conditions which affect the quality of life of these children and their families. However only a small percentage of these kids are very very sick (maybe 5 to 10%). A larger percentage (40 to 50%) may have medical conditions that require intervention (such as cardiac or GIT surgery, ENT problems etc) when they are young with some ongoing chronic issues – but these medical problems are only a part of these kids lives and there is still a lot of joy and normal living to be done. Up to 30% of kids with DS actually enjoy very good health similar to that of the general population. Until my daughter was born I was unaware of this fact as like you I had always been exposed to the worst case medical scenarios.
As medical professionals we in fact get a very biased, negative view of what DS means health wise.
As the mum of a (very healthy) child with DS I also get to interact with these “sick” kids when they leave hospital – when they are well (which is the majority of the time) – and see how much they relish their lives and how important they are to their families and communities.
loading...
Im currently 25 weeks pregnant and 35 years old. We were provided with the increased odds that we would have a child with DS. The odds were 1:360(?) and the odds of miscarrying after an amnio to confirm we’re 1:200, so it was riskier to find out than our odds of this happening. We knew the risks and decided that come what may, we would proceed with the pregnancy, so didn’t need or want the testing. At my 20 week scan, an anomaly was detected and the dr said it could be something more serious that would be “incompatible with life” and advised us to have further tests to find out.
After many sleepless nights we were able to have these tests. I was heartbroken that the dreams and life I had already imagined for our boy, may not eventuate. I had come to the conclusion that no matter how hard, no matter how heartbreaking this was, I was so attached to this little boy, that I had to give him the benefit of the doubt. I always thought I would be a bit more black and white on this issue and terminate. But the support of our family and the emotional bond I had established meant that this no longer existed as an option.
The relief to find out that everything was well within normal really drove home to me that no everyone gets good news and my heart goes out to those who face the gutting news that something might be wrong with their child.
Thank you for sharing your story. It’s easy to think we are fighting battles alone but hearing about the rainbow at the end of the storm, emphasizes the beauty of the world and of life. Enjoy your family x
loading...
Suzanne thanks for sharing this with us. It’s exactly what l needed to read today. My son had heart surgery too and we were also told he might have downs syndrome. In the end the test said he didnt but we have now found out he has aspergers. Children with special needs require extra work but the rewards are so much more fulfilling. We take such pride in our sons achievements and so will you with your daughter. Enjoy your daughter and her development and never let other peoples fears and ignorance stop you and your family from achieving what you want to achieve. You might need to adapt at times or change some things, but that won’t stop you all from having a fulfilling life nor she. She’s obviously dearly loved by her family.
loading...
Thanks for your beautiful article Suzanne. Your daughter is just gorgeous.
I terminated a pregnancy at twenty weeks fifteen years ago (at the age of 22) after discovering that my baby boy had Downs Syndrome and a serious heart defect that would have given him only a 40% chance of surviving his first year. It was the hardest decision of my life, and there’s not a day that I don’t think about my son (who I had to give birth to after a 24 hour labour, and who we held a funeral for afterwards). You are right about there being a lack of information available to parents in this situation. I was given two days to make a decision, as I only found out about my son’s condition a couple of days before the 20 week deadline for a therapeutic termination. I had spent a couple of years volunteering at a home for adults with Downs Syndrome, so had some idea of what the condition meant, but I was given no access to information on all of the assistance that’s available these days to help children with Downs Syndrome. In all honesty, I don’t know if it would have changed my decision, but it would have made it a more informed one.
I greatly admire your strength and courage. And thanks also for being brave enough to admit that had circumstances been different, you might have made another choice. I often find when topics like this come up, people are all too quick to say that would never terminate a pregnancy if they discovered their baby had Downs Syndrome, Edwards Syndrome, Spina Bifida etc. It’s very easy to say that when you know that you’re unlikely to ever be faced with that choice, or after your amnio has come back with a normal result…
I would just like to make one comment on the point you made about the ‘high risk’ of miscarriage after amniocentesis. There is a common misconception that CVS and amnio still hold a significant risk of miscarriage (the usual figures quoted are a 1 in 100 risk with CVS, and a 1 in 200 risk with amnio). These figures were correct when these procedures were relatively new, but they are now much lower, and recent studies have shown the risk of miscarriage with amnio to be as low as 1 in 1600. Of course, it also depends on the skills and experience of the doctor performing the procedure, and the technology they have available. I have had an amnio with each of my recent pregnancies and the doctor who performed the procedure each time has performed thousands and thousands of CVSs and amnios and has never had a woman miscarry afterwards. I just thought I should point this out, as the fear of miscarriage is often what stops women having further testing during pregnancy, and even if you believe that you would continue a pregnancy after discovering that your baby had a condition such as Downs Syndrome, I can imagine most people would prefer to be prepared in advance.
Anyway, thanks again, and congratulations on the birth of your beautiful daughter.
loading...
I’m so sorry about your son.
loading...
Thanks very much Nak.
loading...
Everyone should read this story by one of my favourite bloggers:
http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html
The rest of the blog is just as fantastic and a great read for many reasons.
loading...
I second that. Kelle is the most inspiring person I have come across, not to mention an amazing photographer and mum!
loading...
She is a beautiful girl and congrats to you. I always wondered if I would terminate a pregnancy if I found out the baby had Ds but after reading this and recently kelle hampton’s post I don’t think I would. Thank you for sharing your story.
loading...
My cousin was born with down syndrome, along with a host of other issues, not least of which was several holes in his heart. He died when he was eight, which sounds like a tragedy until you hear he wasn’t expected to last six months. He was a fighter! We were blessed with seven and a half extra years! I was honored to know him, he was a delight and a clown and a very good friend.
Thanks for sharing your story. I hope it continues to be a long and happy one, just like ours was.
loading...
Thank you so much, Suzanne, for this wonderful post.
I was at primary school in the 80s with a friend who has Down Syndrome and we still keep in touch and meet up every so often. She works in the Australian Public Service and lives independently, and has the most amazing memory of anyone I’ve ever met. Every time we meet, she asks after my parents and sister, even if she hasn’t seen any of them since we were eleven (which is something that not many of my other friends from primary school could remember). I love it when I run into her in the shops and we can have a catch-up in the Woolies aisle.
Thanks for sharing this very beautiful story.
loading...
I’m 36 weeks pregnant. I had a CVS at 12 weeks, because I knew about the uncertainty with ultrasound. I also feared that I wouldn’t face having a baby with Down’s with the grace and love that Suzanne has shown. We wanted as much information and time as possible.
Like Lana Elise I have been reading Kelle Hampton’s blog. Her writing embodies everything that is wrong with society’s attitude to Down’s. Suzanne, your family is beautiful and so is your writing. THank you.
loading...
Thanks for such a beautiful piece – both your daughters are just divine. I had twins last July. At the 12 week scan, we fond out one baby had a 1/250 risk whilst the other had a 1/6000 risk. We didn’t elect for the amnio due to the risk of miscarriage being higher than the risk of downs syndrome and due to the fact we wouldn’t abort a featus that did have Downs Sydrome.
At the 20 week scan, there was a minor ‘soft indicator’. This switched my anxiety levels up significantly and I spent the next 17 weeks trying not to stress, and spending the nights before the birth on the Internet reading about Downs Syndrome, rather than sleeping. As it turned out, my girl doesnt have Downs Syndrome – both babies are healthy.
My friend suggested it was silly to do the Downs Syndrome blood test and out myself through unnecessary stress, given we weren’t going to abort a featus that did have Downs Syndrome. But I actually think that you can only make that decision when you are confronted with the reality. We knew that in theory we would be unlikely to abort, but until we were faced with the situation, we couldn’t be sure. We spoke about our family friend who has Down Syndrome and realised that for us, it wasn’t a reason to abort.
I guess with a little bit of knowledge, comes anxiety. And your story shows that there is still so much unknown that only gets revealed at birth. It really shows, that we have to see ‘risk’ and ‘indicators’ as really small parts of the overall picture, which can only be seen when we meet our babies. And if we loose sight of the overall picture, then we fail to see the beauty and love that a baby, with or without a disability, can bring into our lives.
loading...
Gorgeous Post, brought tears to my eyes. You are a wonderful mum, congratulations on your beautiful girls xx
loading...
What a beautiful story. May your life be filled with love and laughter. God Bless xxx
loading...
I love this post. Thank you so much for sharing. And thank you Mamamia for being so great at showing different sides of stories and different points of view.
I totally agree that people need to be more informed about disabilities. More awareness will definitely help people fell less frightened of raising a child with a disability and also help all of us in interacting with disabled (mentally and physically) people in general.
loading...
Thank you for this lovely post. I have had the pleasure of being around some people with down syndrome and I have often thought that there take on the world is so much more beautiful than mine. Look after your little girl, she will delight you.
loading...
I work in a special school, and there is so much misinformation and fear about children (and adults) with disabilities. I describe the kids I teach as like big toddlers. People tell me I’m amazing, but I get to go and work and laugh and have fun every day. And yeah, there are some tough days, but the goo far outweighs the and.
I read a statistic that 80% of kids with DS are aborted. I often think that when you have a child you don’t know what to expect. You don’t know if your child will develop cancer, or be hit by a car, or will develop autism. We have kids that were born normal, and caught an illness-a severe asthma attack, whooping cough, meningococcle, which affected their health.
Look, I totally understand how hard it is to bring up a child with special needs. I deal with it daily. But the kids I teach, particularly with DS, are the sweetest, funniest, spunkiest, most persistent kids I have ever been lucky enough to know. I am proud of them daily.
To the author-and others who have children with disabilities-get as much early intervention as possible. Get as much funding as you can-fight for your children-you are their advocate. Early intervention-OT, Physio and Speech therapy is VITAL.
loading...
agree on this point; find a group that will be your advocates and support. Our little boy has developmental delays and I still suspect autism. We have been involved with Lifestart since he was 2 1/2; they are a godsend and such a support to us. Many in our class have down syndrome and they really are such beautiful kids. Suzanne your daughter Chloe is just beautiful. All the best with your journey and hope you find the support that you need x
loading...
Thank you Suzanne for writing such a beautiful article. What you wrote is EXACTLY what I felt 1 1/2 years ago when my second child was born with Down syndrome. I was extremely ignorant to not only Down syndrome but all disabilities and was always under the opinion that I would abort if I ever knew there was something wrong with my baby. However, I didn’t find out until he was born and am now very grateful that I didn’t. I live in a small town and there are people that I have never seen smile before, that is until my son gives them one of his big cheeky smiles.
I have two children and my hopes and dreams for the two are exactly the same no matter of disability. That they both grow to be honest, healthy, educated,independant and most importantly happy people.
loading...
Oh my goodness Nicole. That is one beautiful little man. My downs brother is 42- I can tell you those smiles never go away! Beautiful!!
loading...
He is adorable! What a cheeky grin!
loading...
Thank you for sharing your story. I went through a harrowing experience with my eldest; our 12 week scan suggested a very high risk of DS and the subsequent amnio and wait for results was horrible. That time was spent in lots of tears and seemingly endless, circular discussions. Ultimately we decided we would terminate, based in large part on a family we knew whose son with DS experienced constant medical intervention until he died in his early years at school. I’ve read lots of comments here about how many people with DS become wonderful and happy adults but sadly that is not always the case. I am grateful for Suzanne’s story and genuinely wish her and Chloe well but raising a child with complex needs is a fraught situation and I believe parents and their medical professionals are the ones best placed to make the decision.
loading...
What a beautiful story. I am currently pregnant with our second child, and my husband and I agreed early on that we would have the 12 week scan, but only to be prepared in case something did crop up. We would not terminate a DS baby. I am pro-choice and would totally understand someone making the choice to terminate a child with a serious disability. But it is not a decision my husband or I could live with, or explain to our son one day.
I knew a family that had four children, and the eldest and youngest had downs. The eldest was living in a group home, had a girlfriend whom he was planning on marrying and starting a family with, and had a full-time job he loved. He was amazing.
loading...
Beautiful Post- Loved hearing your story about your lovely daughter.
loading...
What a beautiful beautiful story.
loading...
Thank you for sharing your story Suzanne – it is honest and brave. I may be criticised for this but I often read stories about children with Down Syndrome and the parents say the child is “happy, always smiling etc and adds so much to our lives”. I sometimes feel that a child with DS has to be “more” than a “normal” child to be acceptable and that somehow seems unfair to the child. What if the child is not the things that are often said about a child with DS, what happens then? I don’t mean to take away from your story Suzanne but I am simply curious about this.
loading...
Have you MEt a child with downs?
loading...
Yes, many actually. I have worked in a hospital paediatric ward and I still question this as per my comment. Furthermore, I really hate it when people refer to children with DS as a having “downs” or “a downs child”.
loading...
to your first comment- if a child isn’t all those things that we “expect” of a down’s syndrome child- does it matter? What child is what we expect? We love our children regardless. Though, in my extensive experience of people with down’s syndrome- they are all affectionate, happy and optimistic.
To your second comment- not sure why it is offensive to refer to somebody as “down’s”- really don’t see the offense in that at all, I have to say.
loading...
I think that what Curious was trying to say was that referring to a child (or adult, for that matter) who has Down Syndrome as a “Downs child” reduces that child to its syndrome, which is a disservice to the child who is, of course, so much more than his or her diagnosis. I tend to agree.
I also think that Curious wasn’t questioning whether you would love a child with Down Syndrome if the child wasn’t what you would “expect” – I think what Curious may have been getting at was that in focusing, for example, a “happy” disposition, there is a risk that you are removing the latitude for a child with Down Syndrome to just be a child, with the moods, temperament and foibles that come with the territory. Children are joyous, happy, bright, spunky, funny, delightful and difficult, in varying amounts on varying days, regardless of any diagnosis that they have.
(Curious, apologies if I have verballed you!)
And, what a wonderful post this was.
loading...
Well said acanberramum. As a doctor and a mother of a feisty delightful intelligent 2 year old daughter with DS I think it is vital people remember Down Syndrome is a medical diagnosis that afflicts people whose personalities and abilities are as many and varied as those without that extra chromosome!
loading...
I have to say from my experience with Chloe, it has actually been those around me who know nothing about Down syndrome (and perhaps don’t know what else to say to me) that tell me (in some cases repeatedly) that I am so lucky because children with DS are always so happy and they are the most loving children. The parents I have met who also have a child with DS have never said anything along those lines to me. They have instead indicated that their child with DS is more the same as their other children than they are different. Maybe some parents of a child with DS say how happy their child is because it is their way of letting people know that everything is ok.
My daughter Emma who doesn’t have DS is also very happy and also very loving so I don’t know why people even say these things or make that connection. Chloe is a wonderful baby but she certainly lets me know when she is unhappy about something! She is not happy all the time and up until recently, she wasn’t a very happy smiley baby either.
I also don’t think it matters whether someone says DS child or child with DS baby. As long as the reference is respectful, that’s all that matters.
loading...
Congratulations on Chloe – she is so beautiful!!! Your story is so inspiring..I wish you lots of joy from her in years to come!
loading...
So nice to hear your story! My husband has an uncle with Downs and I have often thought that, just as you said, people terminate when faced with a possible Downs baby due largely to fear and ignorance. He is the sweetest, most affectionate person. He is now 55 (in terms of the ageing process, this equates to around 100 yrs old for a “normal” person!) and living quite contentedly in a care home. But he has lived a full and happy life. He has always been somewhat of a celebrity amongst his neices and nephews and generally loved by everyone. Yes, it wasn’t always easy for his parents, but he gave them great joy in return for their hard work and was a particular blessing to his mum in the last 10yrs or so of her life after his dad died.
I’m sure your daugter will be the same – a beautiful, happy, affectionate person with a full and happy life ahead of her!
loading...
Thank-you for sharing this beautiful story. It has really touched me. I am slowly discovering that the parental journey is so much more than I thought it would be – it is about humility, courage and expanding one’s heart to accept all that may come – the joys and the challenges.
loading...
Beautiful. The challenges for parents of children with a disability are great but isn’t it wonderful we can celebrate children like Chloe for what she CAN offer the world, rather than what she can’t. My mum still has the 1 page pamphlet she was given in 1972 “So, your child is a Mongoloid”. She had to scream & yell to be given her baby as the medical staff felt it would be easier for her to never see him as he would be going straight to Kew Cottages (an institution). He has been the most joyous, life affirming presence in my life. Enjoy your beautiful girl xoxox
loading...
You are gorgeous Edwina. May his presence continue to bless your family.
loading...
My heart bleeds for you and at the same time it is filled with love and admiration.
The journey you have been on and are about to continue on is a familiar one.Except,I now have almost 16 years ‘experience’.
My son wasnt diagnosed prior to birth.It wasnt even suspected!We learned about his VSD and cataracts even before we found out he had Down syndrome.
I wont go into all the detail of what happened in my life or my sons life between then and now.Not on an open forum anyway.
I will say that we have a much more extreme disabilty whether its cause is Down syndrome,medical intervention or something else we will never really know.
All I do know is I love my son and admire the courage he has.I thank him for the strength I have discovered and never imagined myself to have.
Your daughter(s) are beautiful and I hope and pray your baby remains in good health.I have no doubt she is in good care.
Thank you for sharing your story and perhaps opening up a few hearts and eyes.
loading...
Thanks for this beautiful article, Chloe’s smile is gorgeous. I am 31 weeks pregnant with my third child. I have a 1:300 chance of having a Down Syndrome child. I really didn’t want to have the follow up amnio test; what will be, will be. x
loading...
I am pregnant with my third child and, like my previous two pregnancies we didn’t bother with the 12 week scan to find out the risk of our child having down syndrome. There is no way we would terminate even if we found out for sure so I didn’t see the point (especially since it is only a risk indicator and the amnio required to confirm it would put the baby at risk of miscarriage). I don’t understand why there is such an emphasis on Down Syndrome and such an expectation in society that confirmation should be followed by termination. They are such beautiful, happy children and adults – how can we assume they will have no quality of life. I understand that they do have health problems that they must contend with, and the level of disability varies for each baby/child/adult, but who’s life is perfect? Who are we to decide that their life isn’t worth it?
I understand that it is difficult, and I also understand the grief process that a parent goes through when they discover that their child carries a disability – I think it is normal to grieve the loss of the child that you expected, but that doesn’t mean you don’t love and embrace the child that you have. I hope more people share their stories, Suzanne, so that hopefully the fear surrounding Down Syndrome will finally be dispelled and those beautiful children will have a chance to live their lives and to bless those that their lives touch. Your honesty in admitting that you would have terminated if you had found out earlier on, and your relief that you found out so late is exactly why I feel the way that I do. And more balanced information in early pregnancy I think would make a huge difference to challenging that stigma, as well.
Thank you so much for sharing your story.
loading...
So beautiful. I love meeting down syndrome children because as you say, they seem so loving and caring and I think it’s so sweet.
loading...
Suzanne
I’ve just relived the day my son was born almost 7 years ago. Thank you for sharing
loading...
Thanks for your article, Suzanne. Our son was born over 20 years ago. He has added so much to our lives.
loading...
Your Chloe is lovely, Suzanne, a beautiful post. I was thirteen when my mother gave birth to my brother who had Down Syndrome in 1957. There was no information or support for my parents. Also no early intervention for education. Danny was their sixth child. The doctor told my parents to put him in a home and forget about him. Of course they didn’t follow that advice and he came home. I’ll be honest, it was very difficult for my family, my mother already had a big family and but somehow they struggled on. We knew no one else in Sydney that had another Down’s child. It must have been very stressful and continued to be for years. Danny started going to a Rudolph Steiner school at six. At least it gave my mother the breathing space she needed. Fast forward to the present and Danny and happy in his group home and in his world.
At least Chloe has been born in an era where you will get a lot of support and Chloe will lead the fufilling life she deserves, good luck to you all.
loading...
I’m not a fan of Oreo unless its skoead until its mushy and soft ;p The idea of stuffing the cookie with a cookie? I don’t know in terms of texture and taste, in my head it doesn’t sound good but with cake?! Yeah! Totally! They could stuff it with like chocolate balls that when u take a bite caramel spills out! Like syrup (Oh I can go forever with ideas! ;p) (Ya 7afth tanqa9 lina uw7aydah! ;p)
loading...
What a beautiful story from a mum who just loves her girls. Chloe is a lucky girl. I am doing my Masters at the moment and my research is on some aspects of social processing in people with DS. So far I have had nothing but lovely experiences with the wonderful people I have met and am really hoping to help by adding to what is known.
loading...