The emotional impact of diagnosis

March 19, 2014 in Diagnosis, Emotions, Post-Diagnosis Health

Many moms report that the most difficult part of being the parent of a child with Down syndrome is the diagnosis and the immediate aftermath. Moms report thoughts and emotions they never thought they would have. Most are not prepared for the onslaught of emotions, and the intensity shocks them. Have you just received a diagnosis? What are you feeling? If some time has passed, how did your feelings change? If your baby has been born, how do you feel now? Do you believe receiving a prenatal diagnosis has helped your state of mind now that you have your baby? Do you regret your decision to find out in advance?

CoorDown in Italy also produced this beautiful video for pregnant moms featuring individuals with Down syndrome. Their message to you expectant moms who may be struggling to understand a diagnosis:

Watch this video featuring people with Down syndrome and their message to future moms by CoorDown in Italy.

In addition, you can also read letters from individuals with Down syndrome to to new members of the Down syndrome community at the Congratulations Project. These letters are designed to inspire, encourage, welcome and, most importantly, congratulate new parents and siblings of a child with Down syndrome.

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29 Responses

  1. Megan Landmeier says:

    My risk of having a baby with DS was very low until 10.5 weeks into our pregnancy, when we were referred for CVS due to an abnormal nuchal fold. We had the procedure the following week, and we are at almost 19 weeks right now. The first four weeks after hearing our baby girl’s diagnosis were hell on earth. We knew before testing that we would keep our baby no matter what, but as parents who are only 30 and with our first child, we had different expectations for her than a prenatal diagnosis of anything but perfect health. Her odds were still only 5-15% of having any kind of chromosomal difference! We are healthy! Why us? And most importantly, what will life be like for our little girl? Why will she have to work harder than other kids?

    I think that, like with any big news that isn’t what you want to hear, I needed time for it to sink in. From the moment I heard we were at increased risk, I think I knew deep down that our baby had DS. I became frustrated with everyone telling me how “well-prepared” and “well-equipped” we would be, because I teach Special Education.

    As time has gone by, we are now able to celebrate our little girl. I am still worried, we know she will require heart surgery for the AV canal defect, and I cannot wait to be past 20 weeks, since our doctor told us that will be the real “she’s gonna make it!” time, as opposed to the 12 weeks we’d anticipated. We are starting to buy her clothes (did I mention she’s the first grandchild? and first girl on one side of the family in over 30 years?) and books. We cannot wait to meet her.

    There are still times of sadness, but more than anything, we expect that Ellie’s presence in our lives will bring us joy. The waiting is very hard. We worry about her, we worry about providing for her financially, we love her, we want her to be happy and healthy.

    The best friends have been the ones who provide for practical things (the first weeks of the diagnosis, as well as the day after CVS, some folks brought us dinner, etc), who share how much they’ll love our daughter, and who don’t pity us. The best comments have been, “You guys will be such great parents, I know this isn’t the news you expected, but Ellie will be wonderful.” Our genetic counselor said, “Cling to each other.” She way win hands-down for best advice and most helpful individual!

    All that being said, with our next child, we will find out the gender and that is IT. Knowing her diagnosis for 28.5 weeks before her due date seems like just too much. I’m glad we have the diagnosis so we can prepare, but next time, I don’t want nuchal fold measurements, I don’t want risk percentages, I want to just enjoy my pregnancy! After all, we’ll keep and love our children no matter what!

  2. Jessica says:

    First of all I want to say congratulations to you and your husband. I have a son (17 months) and he has down syndrome. I want to share with you my story and it might help you. We didn’t find out our son had down syndrome until he was 1 day old. The flood of emotions my husband and I felt, is, well, an understatement. Instead of me taking you back to that moment, I would rather tell you about the past 17 months. When I tell you what our son has brought to our family, well, I don’t think I can quite describe it into words. I can’t walk into a room without him lighting up the whole place. His smile is truly one that is unforgetable. The happiness that kid oozes is contagious. I don’t want to stereotype that all kids with down syndrome are happy, sweet, kind, etc. Our little guy is all those things, but, he is still his own person. He can be a stinker and doesn’t like to hear the word no. He is absolutley in love with his big sister (she is 4) and is imitating her more and more everyday. What I am trying to get at it is that your little girl is going to be extra special. We are the blessed ones. We are the ones that get to raise these beautiful children and learn from them. I can honestly say that I would not have wanted my son any other way. He is an inspiration to my family and I think we all work harder to make sure he is where is should be developmentally. I know I could go on and I but I just want you to know that you have a friend out here if you have any questions, concerns, feelings, anything. I have been there and would love to be an extra set of ears for you. I am so happy for you and I know how excited you must be to hold that precious girl for the first time.



  3. Maggie Fluck says:

    I went in to preterm labor at almost 30 weeks. It was only then that we learned Rachel had Down syndrome and that she has a stomach issue (duodenal atresia) and needed to have surgery after birth. We were crushed to say the least. I don’t think we have ever cried as we did that week before our girl was born. We thought the world had ended. After a two month NICU stay and surgery, we brought Rachel home 5 days shy of her original due date. She has had some medical issues since then but nothing can keep her down. She was a preemie AND has Down syndrome but she is a crazy woman. She wants to do everything and I know she will. We love our girl to pieces. I can’t imagine our lives without her and I hate how we reacted when we heard she had Ds. I am happy we did not find out too far in advance before she was born. I would have still had her, but I would have cried every day of my pregnancy. There is soo much information out there about the medical issues that can come with Ds you start to think that your child will have them all. It’s overwhelming. Your baby is your baby. They are your flesh, your likeness, your attitudes…with Down syndrome on the side. We now know just how lucky we are to have Rachel and I am so thankful that she made it through such a difficult delivery.

  4. P says:

    I am so proud of you for finding this website that is perfect! I hope you continue to sort through the variety of resources and find the best that fit your needs at the time. I have read that no one seems to regret finding out but I did not know and do not regret but in fact am more thrilled we did not know and chose NOT to get an amnio. BUT I wish I had contacted more organizations or done more than medical only (soft marker for heart defect) research as I didn’t want to “burden” or be told to come back later as 2% was too low a chance.

    Anyway, any percentage is real and you will meet people you might want to keep in touch with regardless. This reality I know now but had not imagined it when pregnant. We are a fun group! Quite a unique mix, like our kids! Welcome and enjoy your 30 year awaited grandchild like no other and all the rest of the long awaited souls entering our world. We love you and your decision to join us and we have families waiting to love you all over this world! Your own and your peers and long lines of adoptive families!!

    To quote others, the ride may have higher highs and lower lows but life’s a roller coaster as always. Welcome aboard, float along with us!

  5. I am the proud mom of a 17 week old bundle of heaven named Josie. She is my life and I could just eat her up. We found out at 37 weeks that there was a good chance our baby would have DS. I was sent to a perinatologist because of low weight gain. He, in-turn found our baby to have the AV canal defect which was an indicator of DS. Needless to say the last 2 weeks of my pregnancy were hell. I layed on the rug in her nursery sobbing uncontrollably that my baby was “broken.” I almost can’t remember how “bad” I felt because she has placed so much “joy” in my life now that all of that seems like a bad dream. I know there will be trials and tribulations to come but every day is a new day with her and I am blessed beyonds words to be able to call her mine. We will be having AVSD surgery on October 13th at Vanderbilt hospital in Nashville, TN. So many have told us how different she will be, so full of energy. She is my snuggle buddy and I will forever be grateful to her for putting what is really important into perspective for me!

  6. Ann Fontenot says:

    From bloodwork, we knew we had a one in seventy chance of having a baby with DS. Since we were committed to the pregnancy, we declined further testing that risked miscarriage. If a diagnostic blood test would have been available, I would have had it to prepare myself and family. Now, I wish we had told family that our baby may have DS. We tried to look at the 69 chances that she did not have DS and chose not to “worry” our family. At birth we found out, so everyone was shocked and did not know what to say. Instead of joy there was fear and awkwardness.
    I am now involved with our local DS group and am thrilled at your website. Our fear and awkwardness were replaced by tremendous love and satisfaction.

  7. Christine says:

    I am the proud first time mom of a 19 month old daughter with Down syndrome. Here is our story: my husband and I had been trying to six years to get pregnant. By trying I mean if it happened great, if not that’s okay too. It’s actually been two years since we got our pre-natal diagnosis of Down syndrome. I held it together in the doctor’s office (just there for a regular office visit so I was REALLY shocked as I wasn’t there because she told me especially to come in) but by the time I got to the elevator I was a blubbering mess! Then we drove straight to my husband’s parents house and we all cried. They had been down this road before as their daughter had placed a child with Down syndrome for adoption just five years earlier. They were upset but not as upset my husband and I were.

    My husband and I are pretty open people, so we went home and called just about all of our friends in our inner circle. I think I cried on the phone with one particular friend for two hours. I thought about running away. I’ll never forget my husband in one room bawling on the phone and me in another room bawling on the phone and the dog going back and forth between both rooms wondering what the heck is going on. It seems so surreal to me. I was terrified that I would be in out and out of doctor’s offices and that she would be REALLY unhealthy. Having grown up with quite a bit of sickness in my father’s life that is not something that I handle very well.

    For the next two months I was in a pretty deep depression. It was all I could to work out (yes I worked out my entire pregnancy, but that is a 10 year habit), go to work and make it home. My husband and I were trying to decide if we should keep this child. Yes we discussed abortion as I knew that would be a way out, but since we had already heard the heartbeat I knew I couldn’t do it. We were STRONGLY considering adoption as my husband’s sister had done. In fact we were hoping the same family would adopt her too – cousins raised as sisters, kinda cool right? But in the end the thought of never knowing her, never knowing the joy of a child made me keep her (my husband could have gone either way and left the decision up to me and said he would support me in whatever I decide.). I’ve also had an INCREDIBLE amount of loss in my life and I thought if I place her that is just one more loss to my list. I couldn’t do it.

    The ironic thing to all this was I was always REALLY on the fence about having children. I mean I love children – I love their laughter, their innocence, their fun, etc, but I don’t like all the work and responsibility that goes with them. UGH. They also make life more complex I think. So what the heck? Why do “I” get the child with special needs? What the heck was God thinking?!!!!! I know that I have more than risen to the occasion as a mom and most days I love my job as a full time mom and I love Olivia with a profound fierceness. But still I sometimes wonder. This past year has been challenging for me as her delays have really increased and I am worrying more about her future.

  8. Jennifer Enderlin Blougouras says:

    Here is a post I wrote on BabyCenter to a woman who just received a prenatal diagnosis. I wrote it about a year and a half ago:

    Hi there and CONGRATULATIONS! I am a little bit farther along in this journey than you are (my son just turned four). I also have a daughter (typical) who will be three in June.

    You will probably have about a hundred people replying to your post in about five minutes, with all kinds of wonderful advice and hopefully you will find some peace. But here are just a few things I want you to know now.

    I came on these boards when I was one month away from giving birth (we had a late prenatal diagnosis). While I was amazed and hopeful about everyone’s acceptance of Down syndrome, I didn’t think I could be one of these people. I thought everyone had drunk the “Down syndrome Kool Aid.” I didn’t think it would ever, ever EVER be OK. Maybe for SOME people, but not for me. I didn’t sign up for this.

    And frankly, I hated all the platitudes from people:
    * “don’t worry, it will get better.” Oh yeah? I didn’t sign up for “better.” I signed up for “amazing.” “wonderful” “awesome” not some pale imitation like “better.”

    And I hated this one as well: “I cried for two weeks and then I just fell in love with my baby.” Well, I cried for a lot longer than that, and I didn’t fall in love with him when I finally saw him. I was in a very, very dark place after he was born.

    It took me a long time to come to a place of acceptance.

    Why am I telling you this? I’m telling you this because I am no longer in a place of acceptance. I am in a place of such utter love and breathtaking happiness that my son is MINE that I can’t even begin to describe it.

    I took this hard. SO hard that I felt like I had been hit by a Mac truck and dragged down the concrete with my face being scraped every step of the way. I was the last person I thought could handle being a special needs mother.

    And all I can say now, is that I PROMISE you, you will find peace. You will find MORE than peace. You will find MORE than joy. You are so, so, so lucky. And it’s so hard to see right now.

    Don’t try to rush to this place of peace (I made this mistake. I was like, “Okay peace, hurry up and come now. Okay acceptance, ready whenever you are). The more you try to “get there” the longer it takes. THE ONLY WAY OUT OF THE GRIEF IS THROUGH IT. You have to feel it. You have to cry. You have to get pissed off. But do all this with a hopeful heart. The love for your child just comes, whether you want it to or not.

    I was constantly watching for the day I would fall in love with my son. And you know what? It snuck up on me without me even being aware of it. One day I was holding him in his room, he was sleeping on me, and the feeling of love washed over me so hard I bit my lip. But please know this did not come early for me.

    Remember a couple of other things, too: right now you will feel very angry, though it won’t feel like anger. You will be so pissed at other people: pissed if they give you pity; pissed if they don’t seem to give you pity. No one will be able to do anything right in your eyes. THIS IS SO NORMAL. Try as hard as you can to laugh about it.

    And then, get ready for the biggest, most thrilling roller coaster of your life? Are you ready, you lucky, lucky girl?

  9. Karyn says:

    I found out that my baby most likely had DS when they found her heart defect during an ultrasound at around 19 weeks. The nuchal fold scan was normal but I had lost other babies so was being monitored carefully.

    My first reaction was denial and then my husband and I decided that we would deal with whatever we were faced with. We were upset about the way we were treated. The doctors and other medical professionals all assumed we would terminate but we didn’t even risk an an amnio. We wanted our baby no matter what ‘conditions’ she might have.

    When she was born the reality of her heart condition outweighed the fact she had DS for a while but we went through a process of grieving, we were worried about her future and found it really hard to tell people because we weren’t even sure of our own feelings, never mind being able to deal with others.

    Nearly 5 years down the track we would happily have a number of kids with DS. She is delightful and beautiful and has changed everyone in our family for the better. Sure some things have been a challenge but she has enriched our lives more than we could ever have imagined.

    Our hopes and dreams for her are to be the person she is meant to be – same as for our other kids – and we know she will achieve that.

  10. Catherine says:

    The word Down syndrome first came into my pregnancy around 20 weeks. We were sent to a fetal cardiologist, who could not find Nathan’s complete septum and diagnosed him with another heart defect. However, he was patient and asked me to come back the next week before he made any final diagnosis. When we returned the next week, he saw everything just fine and those fears were alleviated.

    Fast forward to 36 and 3/4 weeks. I went into my OBGYN for a 36 week sonogram. I was asked to return the next day for a second sonogram because the flow from the placenta was not consistent. After that second sonogram, the OBGYN sent me immediately to the hospital where I discussed my options of being induced (which he did not recommend) or having a c-section. We chose the c-section and our beautiful little baby Nathan was born at 3:52pm weighing in at 4lbs. 12oz. and 19in. long.

    Immediately he was evaluated by a doctor from the NICU, which we were aware of due to him being a little early. They took him to the NICU right away and I was wheeled into recovery. I was able to go to my room about an hour later and I was dying to see my little baby.

    It wasn’t until 8am the next morning that I was able to see him. I couldn’t walk and he was in the NICU being cared for. Those hours seemed like the longest of my life. Finally, I was able to see him, but it was certainly hard seeing him hooked up to all of these monitors, with IVs and so forth. We met with the doctor who evaluated him at birth and he discussed the testing they had done for Down syndrome. He said he wasn’t positive, but pointed out the markers that Nathan displayed.

    Waiting for those test results were the longest 5 days of our lives. We finally got the results, over the phone (which was terrible), and we both broke down and cried. Neither of us knew anyone with Ds and we were not sure how our friends and family would be with him. That was one of the most scary and saddening moments of our lives.

    As we told more people and did more research, we realized that there is a light at the end of the tunnel. Nathan is a gift from God and we were chosen to be the recipients of this gift. At first, it was very difficult to think about the “what ifs” and the unknown. The more people we saw accept Nathan, the more we became encouraged and turned from scared and disappointed to advocates of our new little one.

    As time goes on, it gets easier and easier. There are still days we struggle with the diagnosis and wonder what it would be like if he did not have Ds. But there is never a day we regret having him and giving him the most wonderful life we can. Down syndrome is a condition, it is not an illness. There are so many things babies and people with Down syndrome can achieve when they are given the chance.

    Is it a scary road? Yes. Is it a road that gets less bumpy and windy as you go along? Yes. It is a road that I wouldn’t trade for the world and there is so much good to come. Nathan is the light of ours and so many other people’s lives.

  11. Patti says:

    My response would be a little long, so I’m posting a link instead.
    In a nutshell: Lily is the best thing that ever happened to our family:)

  12. Aimee says:

    We didn’t know Ethan was going to have Down syndrome. When he was born they didn’t even tell us their suspicions until he was about two days old. It was very hard at first. I cried a lot and felt very alone, greiving the what if and could have beens. Learning as much as I could about DS helped, and communicating with other moms online also helped. I wouldn’t trade Ethan for the world. He is the most loving child and makes me smile even when I’ve had a hard day. There are challanges, between therapy, doctors and my schedule it is hard to keep it straight at times. But bottom line is that our children are well worth the hardships that come with them. Wouldn’t trade him for anything.

  13. Sherri says:

    We had a sonogram at 20 weeks that said there was a good possibility that our daughter had DS, refused amnio, were told a month later that all markers were gone, and an official diagnosis at 5 days old. We worried about telling our sons, then 12, 10, and 2 but they were (and still are fine). I think the emotion that took me by surprise the most was the intense feeling of protection and pride with every milestone she meets. I feel like a mother lion X100 when it comes to our daughter. Now that we’re entering the school system I have somes fears but God has gotten us this far and won’t leave us now.

  14. Sandy says:

    We didn’t know prenatally about Lucas’ DS diagnosis. I went into labor at 37 1/2 weeks and needed an emergency C-section. When I first laid eyes on him, my fears about DS were confirmed (I’d had a suspicion based on his femur), but I told myself it was probably all the drugs they’d pumped into me…I was just “seeing” things. Twenty minutes later, as soon as I was wheeled into recovery, my OB broke the news…”we think he has Down syndrome” — and just like that, the happiest day of my life became the saddest…which is SO difficult for me to say and admit still today, but it is true and there’s nothing I can do to ever change that. I cried myself to sleep that night…I was so pissed and felt so robbed that all I could see when I looked at my only child was his diagnosis. But, early the next morning after his birth, I turned to my husband and through tears said “He makes me happy.” It was so simple and yet I couldn’t explain it or rationalize it or understand it. Truth is though that in those early months, my feelings weren’t always pretty or happy, they were often raw, dark, and overwhelming. I felt God had forsaken me and that my life was over…I cried often and didn’t want to hear or read anything related to DS (which is out of character for me).

    The secret to moving through the grief I was experiencing came in just being with my son and my incredibly intense feelings — good, bad and ugly — and in reaching out to other parents to know we were not alone…I was met with such generous advice, support, and love, which brought about comfort and peace. What has always been interesting is that even those closest to me, can’t relate to my life, which is what makes our online community so essential.

    Fast forward 4 years…Lucas is healthy, growing, thriving and learning…he is the light and love of my life, and he gives us so much to look forward to. We have had our share of ups and downs, but he fills our lives with immeasurable love, happiness and meaning. When Lucas was a tiny baby I would whisper a prayer by his crib late at night for him to grow into a “happy, healthy, smart and independent boy” and now he says the prayer along with me…if I only knew then what I know now.

  15. Amy says:

    We had a prenatal diagnosis with Abigail confirmed via amnio at 22 weeks after a few markers showed up on our 19 week ultrasound. I remember feeling like I’d been punched in the gut, hard, and I continued to feel that way for days. I wanted to hide, run away, and just feel sorry for myself. I worried that I wouldn’t love her as much as my other daughter, that she wouldn’t be able to do things on her own… all sorts of things.

    I spoke with another mom of a child with DS a few days into diagnosis, and it was like putting a cork into an open, swirling bottle — anyone see that episode of LOST? She made me realize that life goes on, that life could still be good, that her bond with her child was real, was precious. It gave me a sparkle of hope.

    I was an emotional wreck for the remainder of my pregnancy – good days, bad days, days where I felt every protective mamma-lion feeling that has ever been invented, days when I didn’t want to face the diagnosis. I did make one decision, though, and that was to advocate for my daughter and to realize that there is nothing wrong about Down syndrome per se, just in the way society views it. I made that leap, and instantly, I had a charge, a goal – to do my best to make this world accept her.

    When Abigail was born, so much of the bad literally melted away. I still had moments — looking at her features, especially as a baby, she looked “different.” I find that she’s grown into her looks as she’s gotten older – or maybe it’s only that I have grown into accepting her so fully, but then again, hair, tone, and smiles help anyone’s appearance, don’t they?

    Abigail was the sweetest, calmest baby ever. Her eyes could bore into yours in such an easy way (I know, oxymoron), and she was so undemanding and mellow that it was pretty easy to parent her for the first few months. Then, watching her determination take over was just awe-inspiring to me. At age 3, she had to have open heart surgery, and the months, days and weeks leading up to that just so clearly solidified in my mind what she meant to me and to our family, and we couldn’t bear even the distant thought of losing her. I was a wreck that day, too. But, she was home 3 days later and happier and healthier than ever.

    She is truly a happy person and full of spunk and character. At age 7, she loves to dance, to watch funny movies, to play princess and Barbie and American Girl doll. She also loves playing teacher, and it’s so amusing to watch her and her daddy play school. She’s so directive with him while she’s being the teacher, and since it’s generally not her style, it makes us laugh. I guess that’s how her teacher is!

    Are there still challenges? Yes, but I find them less with dealing with her than dealing with people who don’t see what I see or don’t know to look for it. I have to be a tireless advocate for her with her school district, but that’s just being a good parent. Parenting is tough, it’s meant to be. But I think the end result is going to be amazing – a young woman with independence, with goals, and with a true knowledge about herself and her value in this world, which, for us, is immeasurable.

  16. nancy says:

    For the most intense time, I was alone. That was the hour after the doc told me over the phone. It’s still hard to write about – that complete break with reality – honestly I was internally debating whether I should call the doc’s office to make sure she had actually called and delivered that news.

    The ensuing days were hard and emotional, and it was impossible to contain the physical manifestations of grief.

    After awhile, I was able to contain it, but it was always just below the surface and would break out every now and then. I did not want people to see that. I did not want them whispering, “She’s not handling it well.” Because it was a prenatal diagnosis, I felt I had to try extra hard to contain it, lest someone think, “I don’t know why she just doesn’t take care of it. She obviously can’t handle this.”
    Even though some people saw the emotional reactions, I never told anyone the thoughts. The wacko thoughts in the beginning that I was not a worthy mate, that I’d failed, that I’d pushed the envelope to far having a fourth child, or even that initial pause in the beginning, making sure the plan to continue the pregnancy was still in place.

    And most people did not see the back & forth emotional pendulum. I think they just saw linear progress.
    I wrote it out over a year later, and even my dearest friends were surprised. But it took the strength of hindsight and experience to be able to say those things.

    The difference between those days and today – it’s like night a day, and Gabby is the sunshine.

  17. Jaimie says:

    So many of these moms share the same journey that I went through. I was 20 weeks when I found out my now 4 year old sweet girl had down syndrome. I remember laying on the table, belly exposed for the ultrasound and the pediatric cardiologist told me she definitely had an AV canal defect but that the good news was it could be repaired with a very high success rate All I heard was “heart defect”. Then the maternal fetal medicine “expert” came into the room, did not talk to me but about me and said “he would be shocked if this baby did not have down syndrome, looking at the heart defect, the excess amniotic fluid, the relatively shorter limbs, etc. I laid there, feeling like I was not even a part of my own body… detached yet I could feel the silent tears falling to the table that I was laying on…

    I went home and asked my mom to take my other kids because I wanted to be alone. I got in my bed, pulled up the covers, and cried, and cried, and cried. I never wanted to leave my bed again. I was always a very religious individual but did not understand why the God I loved so much would do such a thing to me. I yelled out to him and told him “I can’t do this and I don’t want to do this!”

    Well, I didn’t stay in that bed forever. I remember finally being out of tears. I gathered myself and decided that being a mom to my other kids would make me feel better. I would fake it and that would make this other problem go away. My husband was working out of town at the time, so this journey was very much on my own.

    I went to my next regular dr’s appt and the OB/GYN told me I had to make a decision about termination. I told her I did not want to do that and she proceeded to tell me that my life was going to be very hard and it was ok to make that decision and she promises that “God will forgive me.” She became so crazed with this that eventually, that shook me out of my funk. All of the sudden I thought, “This is my baby! Why does she want me to end her life?” Well, that was enough for the protective mama bear instinct to kick in- permanently.

    My baby girl is not a baby anymore. She is 4 years old and I thank God for her every single moment of my life. She completely changed all of our lives- her dad, her brothers, her sister, and her mommy. We are a completely different family than we were before Emma. We celebrate every happy moment and do not take anything for granted anymore. We throw a party every time Emma achieves something special. When Emma learned to walk at 2 1/2 years old, my husband and I would just sit there on the couch and watch her walk, over and over again- in sheer amazement and bewilderment. It was incredible. When she walks into preschool by herself and blows me kisses goodbye, we do the same thing- we are taken back in an eternal state of awe.

    This sweet princess of ours has changed so many people in the community. We have told Emma’s story to so many people and Emma kind of tells that story all on her own- through her example of her life. Things are not perfect by text book definition of a typically developing 4 year old, but I was never really a fan of text book definitions. She is our kind of perfect. I look back to the day when I swore I was not getting out of bed ever again and I cannot believe how far I have come because what I was fearing was not the journey that was to come, but rather the fear of the unknown journey ahead, and let me tell you- this journey is nothing to fear, but to embrace. The most amazing moments of our lives are the ones that we are not making happen but somehow happen to us through the intervention of Heaven above…

  18. Jody says:

    We found out that Ava had DS when I was 18 weeks pregnant. Like everyone else it seems, we were devastated. We cried and we cried and we cried. Everyone told us that we would learn to accept it and love her so much. She would be so special. And they were right. Ava is now 9 months old and the light of my life. But she was born with health problems. Not heart problems-we escaped that-airway issues. She had laryngomalacia which prevented her from breathing well and from taking a bottle. After 31 painful days in NICU we brought her home with a trach and a gtube. Our lives then seem to spiral out of control. We were overwhelmed with doctors, specialist, interventionists, therapists. You name it. We even had to get a private nurse for Ava so I could work because she could not go to daycare. Slowly I began to accept Ava and love her unconditionally as did everyone who supported us. But it has been harder for my husband. He loves Ava but still struggles with so much pain, guilt, fear and disapointment. We are in counseling and things are better but many days are still a struggle. I was glad to see some of you post that you took a LONG time to come to terms with your child having DS. I know my husband is going to get there but it hurts that I can’t seem to help him sometimes. He is a wonderful, loving father and husband and he feels so guilty because he did not bond with her like he did our four-year old son. He also obsesses with worrying about her future. I would love to hear some encouraging words about how wonderful our future is going to be when he gets through his grief. Thanks to all of you..


  19. Megan says:

    I’m adding. I am the first response on here, when I was pregnant. Here is a year ago, after Ellie was born. Not a lot of time to type right now, because she is currently crawling after every cord/wire/electronic device in the house!

  20. Gretchen says:

    I received a surprise diagnosis at birth for my baby Julian, who is now almost two years old. When I realized he had Ds the moment I held him for the first time, this baby that I was given (a baby with Down syndrome) was NOT the child I expected and I immediately rejected him. It was horrible. I couldn’t bond with him and all I could see was the Down syndrome. I was angry, I was shocked, I feared the worst. It took me a while to accept Julian for the little boy he is – MY BABY. If you read the stories on my blog – Julian Thomas Sherman – A Birth Story, and then follow on to read about how much in love I am with Julian now that I see PAST the Down syndrome and just see HIM – you will see how far I’ve come. The early days of a diagnosis are very difficult. You think horrible things about the life of your child. Let yourself think these things, accept them and realize it is typical to feel this way. Everyone takes a different amount of time to digest a diagnosis. Let yourself go through the process. I did not realize I was grieving the baby I expected – but once I realized that, and allowed myself to grieve, I was able to move past the diagnosis and now – we live a pretty typical life with an almost two year old. He is taking a few steps, saying a few first words – knows tons of sign language to communicate and loves hanging out in his typical daycare room. He is my little peanut and I am so proud to be his momma!

  21. Irene says:

    We are one of those rare families that got a very late diagnosis — when Isaac was 8.5 months old. Yes, the news was devastating. But we were so lucky to have gotten to know him as Isaac first, so his diagnosis was immediately secondary to who he was.

    We are 3 years into our journey, and Isaac is now a big brother. He is clever, energetic, stubborn, naughty, and cuddly. And yet, some days — much fewer now than before, I still catch myself wishing he didn’t have Down syndrome. Thoughts like, “wow, if he does so well on his tests” (he scored average in all categories except for expressive language on his 3 year evaluation) “imagine what he’d be like without Down syndrome.” Or, watching my younger son hit milestones so effortlessly makes me realize how comparatively harder it was to help Isaac reach those same milestones.

    Even now, I feel flashes of anger stemming from fear of the future. How will he live when we are gone? So he’s brilliant at opening up the child gate and getting on and off the tricycle: does that mean he will drive a car? We don’t know. None of us does, about any of our kids. But there is a certain scariness when I look at the complexity of the life I live and wonder how Isaac will cope.

  22. Chris says:

    I found out at 25 weeks after a car accident. I wasn’t hurt but a routine ultrasound (my first this pregnancy) indicated a heart and bowel defect, thus encouraging further tests. I was devastated. I cried harder than I ever had. Sobbed, gut-wrenching sobs. The one thing I had prayed for in all my previous pregnancies was to not have a child with DS. This prayer had not occurred to me during this pregnancy. I was frightened, embarassed (I was 42 and had already gotten the “gosh, don’t you know how to prevent a pregnancy?”) and shaken to the core. They called in a grief counselor immediately. This wonderful nurse sat with me and said I had to grieve the child I thought I was going to have before I could accept the child I was given. My husband said, “look, she is still our daughter, she justs happens to have DS.” On the outside I learned to mask my real feelings. I cuddled with her, sang to her, did everything I was supposed to just like I had with my others. Slowly but surely her wonderfulness began to show through, and by the time she was 3 (years, not months) I no longer looked at her as my DS daughter, but strictly my daughter. She is now 8 and I sometimes wonder why people are looking at her too long and then I laugh and think, “Oh yeah, the DS. Isn’t she adorable?” We don’t know what any of our children will do as adults and all we have control over is to provide them with maximum opportunities along the way. I do wish the docs didn’t routinely present new parents with an endless list of horrible illnesses and things that could happen to their child with DS- they certainly didn’t do that with my others! I lost friends over my choices, but in looking back I can honestly say they weren’t friends at all. I have gained so many RICH relationships, my other 4 kids are extremely compassionate and kind, and my confidence as a mother and strong woman has sky-rocketed. Some day you will realize that your child with DS is far more like your other kids and yourself than different.

  23. Lara says:

    My DH and I had long since thought we were done having kids. We have a 13 year old son, an 11 year old daughter, and we’re both 42. We were so shocked to find out we were pregnant. Immediately we were told that due to my “advanced maternal age” I was at risk for having a baby with issues. My blood work came back with a 1 in 5 chance of Ds, and a 1 in 18 chance of Trisomy 18. I decided on the amnio because I just wanted to prepare myself, emotionally, physically, mentally…to the extent that I could. I think I knew what the diagnosis would be. We received our pre-natal diagnosis on World Down Syndrome Day, this past March 21st, 2012. The doctor called and left me a voice mail at work. He had told me after the amnio that I’d only hear from him if it “was bad news” — so of course when I heard his voice on my voice mail I immediately slammed down the phone and began sobbing. Later that night I had my husband listen to the voice mail and call the doctor back to get the details. Translocation Down syndrome. I was scared and overwhelmed and sad and angry. My thoughts immediately went to “nobody will think my baby is cute…” “nobody will love my baby or want to cuddle him…” These were my first fears. Then I thought, “here I am, already getting older…now I will have this baby to care for and he may never really be independent…who will care for him when I can no longer do it?” We cried for days…we still cry sometimes. But honestly, reading through all of these posts and the many blogs I’ve been directed to and the unbelievable support on websites like BabyCenter and this one, it’s just been the balm that I have needed. I’m turning the corner, emotionally, and my grief is turning to acceptance and I am so glad that I had the opportunity to feel all of these feelings now, before my baby arrives, so that hopefully I will be able to savor those sweet moments when he is placed in my arms. The fear of the unknown may still be here, but I hopefully won’t be afraid of HIM. It’s also made a huge difference to hear my friends and family reassure me that this baby will be loved. Much loved. And that Ds has nothing to do with that. That means so much to me. He’s my baby ad I want him to feel all the love he deserves.

  24. Jackie says:

    We found out Lauren had DS when I was 18 weeks pregnant. We were totally in shock. I did.some serious grieving and then love took over. Lauren ended up needing her AV canal heart defect repaired at 6 weeks.old, last week! She is now 6 days past surgery and doing awesome!! She is truly a gift in my life and I can’t tell you I don’t deserve to be her mom. When we first found out she had DS I though, “Why me?” I still feel that way but for a totally different reason!!! I don’t know why I am so lucky!

  25. Leah says:

    I found out at birth after she was delivered at home. The second I saw her face I just knew, although before that moment I had never even given the possibility a second thought. I do remember feeling that this couldn’t be my baby, and wondering if I wanted to still give her the name I had picked out. I felt ashamed and scared to tell my own family and friends.

    But it didn’t take long for me to feel like she was really truly my child, although I still felt that was the saddest and happiest day of my life. On her second day we went to the hospital after she kept turning blue and after a 3 week NICU stay and learning about impending heart surgery, her Ds diagnosis didn’t really matter nearly as much to me. I fell in love with her so quickly, and had to fight for her so soon. My worries took over my concerns about Ds. I got educated fast, reading everything I could, getting in touch with the local support group, following blogs and finding the Babycenter Ds group. It helped so much. Now my girlie is 14 months and is hands down the most amazing thing that’s ever happened to me. I wouldn’t change a thing about her. If I could go back I would tell myself that there as really no reason to be disappointed and I would tell myself to be easier on myself, to take care of myself better.

    I did struggle with the first few months of her life, but a lot of that was just the fear of waiting for heart surgery and getting through it and the stress of trying to keep her fed while in heart failure. It was a lot to deal with in the midst of hormones and my own recovery.

    In some ways, I wished I would have known prenatally, so I could have possibly expected the medical issues, but in retrospect I am glad that I learned when I did.

    In fact, her heart surgery was a piece of cake.

    These days I still get a little sad and frustrated with some of the delays, but I know that she is doing things in her own time. And she is so smart. Knows her colors, animals, body parts. And she’s learning to read (at least I think she is.)

    What a gift!

  26. Extranjera says:

    First of all, Congratulations! You are in for an awesome ride!

    We found out that our daughter had Ds when I was 13 weeks pregnant with her. Apart from a week of fright before we knew what the actual chromosomal glitch in her make up was and whether it would turn out to be something causing pain and suffering, we never felt grief. Or disappointment. Or in need of support. We just looked forward to meeting our first child. We understood that her having Ds would not mean that her life would somehow be harder, sadder, or less fulfilled than anyone else’s.

    It is what you make it, right?

    Thanks to the prenatal diagnosis we were able to do a ton of research (Thank you Google!) and hit the ground running when she was born. We also immediately told pretty much everyone we knew, accompanied by clear instructions on how to approach us regarding the diagnosis: absolute no on pity, commiseration, ‘support’ and yes on friggin great congratulations on our firstborn, and sneaking me coffee while in bed rest. Most people got on board, were willing to let go of the horrible old stereotypes of people with Ds, and be educated. Already, before even being born, our daughter had changed her little corner of the world.

    She is now six months old and is quickly becoming the pampered princess and supreme being of our house I swore she never would, but what can you do, she is just too wonderful to be denied anything (I realize I’m going to have to start setting some boundaries soon to avoid the impending parenting disaster…)

    But really, so far being her mother has in no way been different from being a very engaged parent and although there are some delays, she’s progressing nicely and will no doubt someday make some boss very uncomfortable with her demands, and some poor man very miserable by having been brought up believing she only deserves the best.

    We are still waiting to discover just what will set her apart from the masses, since it will take more than just one extra chromosome to make her special. The truth is we are just a couple of ordinary people bringing up a normal, although not typical, kid in a world that if given a proper chance and instruction will accommodate her just fine.

  27. Chris says:

    I am still absorbing the ultrasound given a week ago, that shows our 22 week baby is IUGR, and is lagging on both abdominal and femur length by 2-3 weeks. It was almost a complete shock, because a month earlier, we found he has swelled ventricles as well. We have another appointment in a week with a paed and a genetics person, which I am fearing very much. I’ve never been so scared in my life. I’m also angry that we saw a miscarriage specialist before getting pregnant, and they never even looked at my sperm. Because my wife is a Christian, she refused the triple screen.

    The stories above give me some heart, but I am still worried like hell. I am 54 and self employed and my wife is 41 and only makes part time money. So I am worried we won’t have enough for special needs, and we won’t be around to help if our baby is special needs. Can anyone tell me, is there more bad news to come? When do these heart defects or intestinal problems typicaly show up on Ultrasound?

  28. Gina says:

    I’m 17 weeks pregnant today. I took a harmony blood test last week and the results came back positive. although it does have a chance of a false positive, it’s very low, so I’m preparing for a DS baby. My doctor is still pushing having the amnio though. I’m tired of being pressured. I just found out today I feel guilty, like I did something wrong, I feel worried and the baby’s future. I feel like I was selfish deciding to have a baby at my age (38) and guilty that for a split second I considered terminated because of the diagnosis.

    Thank you for all that you’ve shared, while I know my emotions might go back and forth, right now I feel like you’ve talked me off the ledge. There must be a reason this baby is coming into our lives and I can’t wait to meet him/her.

  29. Brac says:

    My wife and I are expecting a baby with Down Syndrome in Feb 2014.

    DS was diagnosed at 13 weeks by CVS following a greatly enhanced nuchal translucency measurement.

    We went to to the 12 scan full of joy that the pregnancy had not miscarried and expected good news. Instead the room went very quiet and the sonographer said “you need to talk to a consultant”. I knew this was not good, but hoped the risk assessment would not be too grim – even 1/5 would mean 80% chance of a “normal” outcome. But the sonographer was evasive about the actual measurement. The consultant said there was only a 10-15% of a normal outcome, a risk of Down Syndrome, and a high chance of severe chromosome abnormality (Patau, Edwards). We were offered termination on the spot which was a shock but opted for a CVS instead, and Down Syndrome was confirmed.

    My wife and I both feel that God is calling us to care for the little one, but that hasn’t made acceptance easy. I come from a highly educated background and am terrified of mental health issues.

    Also the uncertainty is a worry. Some people are only very mildly affected; for others it is a big problem, even with all the best treatment and support. The pregnancy is progressing well, but we have no way of knowing how much the baby will be affected, and perhaps won’t know for maybe a long while after birth.

    It is greatly encouraging to hear positive stories from people who have already been through this.

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