Did I Cause My Child To Be Born With Down Syndrome?

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[This post is a part of the "New Parent Guide To Down Syndrome" blog series. Be sure to check out the other posts!]

is it my fault

Down Syndrome isn’t yours (or anyone else’s) fault.

If you ended up on this page because you were searching for down syndrome causes or what causes Down syndrome, let me give you a quick spoiler alert: It isn’t your fault that your child was born with Down Syndrome. You did not cause Down syndrome.

There’s Nothing You Did To “Cause” Your Child To Be Born With Down Syndrome

First let me reassure you, there is nothing you could have done to cause your child to be born with Down Syndrome. Nothing you ate, didn’t eat, got exposed to, vitamin you forget to take or activity you did that caused your baby to be born with Down syndrome. If that thought has ever crossed your mind you can take a deep breath, and let go of any guilt or anger you may be feeling, because Down syndrome isn’t your fault.

It is very likely that you were surprised by this diagnosis at delivery as I was. You had no idea that your child was carrying that extra chromosome throughout your pregnancy. You are not alone, 85% of children born with Down Syndrome are diagnosed after delivery. Your OB did not miss anything either.

You could have had an ultrasound every week (like myself) and there were no clues that your child would be born with Down Syndrome. That being said your child has had that extra 21st chromosome since conception. Before you even knew you were pregnant their genes were set in place and there was nothing you, or your Doctor, could have done to prevent that extra chromosome. God knitted your little one together just as He intended.

our cute son was born with down syndrom

Just a few minutes after birth!

Mommy loving on her new son born with down syndrom

Having some mommy time!

You Don’t Control Your Eggs

We had one very pleasant lab technician ask us

“Which one of you gave him the extra chromo?”

(And yes she said chromo!)

It is most likely that the extra chromosome came from me. DO NOT FEEL GUILTY ABOUT THIS! You had no control over what happens at conception, and cannot pick and choose which egg will be used. We personally believe that your egg was handpicked by God. :)

Is this a topic that crossed your mind when you received a Down syndrome diagnosis? How did you process those emotions / feelings?

We are new parents of a child born with down syndrome

Leaving the hospital to start our fun new journey!

This is one cute boy with Down Syndrome

We love this little guy so much!

our son with down syndrom sleeping

What a cutie!

 

[This post is a part of the "New Parent Guide To Down Syndrome" blog series.  Be sure to check out the other posts!]

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About Rick Smith

Hi, I'm Noah's Dad and I'm passionate about giving the world a window into our life as we raise our son who was born with Down syndrome. I also enjoy connecting with other families, so let's stay connected.

Comments

  1. lorraine yost says:

    This post brought tears to my eyes, Noah is so… precious and yes knit together by our Lord.

  2. chastity mcbryde says:

    you can delete this post, don’t see an option to post privatgely…(typo alert:” We personally believe that your egg was handpicked your God.”)

  3. Denised2004 says:

    Yes we do too! And what a wonderful God and Gift we got!! Everyone should be so LUCKY!

  4. I love that you included the 85% statistic. I’ve been looking for more stats to add to my arsenal. I’m wondering, do you have any idea how common green eyes are in the US? I know that 90% of all prenatal diagnoses of Down syndrome result in termination of the pregnancy (trying not to use language that will upset those who have made that choice for their own reasons). I’ve also read of different studies, some citing 1/700+, 1/800+ or 1/900+ live births are children with Down syndrome. What I want to know and cannot find the stats to back up is this: are conceptions of babies with Down syndrome more or less rare than conceptions of babies with green eyes? I’ve only been able to find studies ranking countries like “green eyes are more common in Iceland than in Great Britain.” The parent and self-advocate group that I belong to has been focusing lately on outreach to the medical community and I think that something like “green eyes are more rare than Down syndrome and you wouldn’t recommend terminating for that” or “how can you call something that is more common than green eyes a problem; it’s just a variation like eye color” would be persuasive. Any help you (or one of your readers) could give would be appreciated!

    • I think it would be hard to determine the frequency of green eyes overall because it is going to be different in each part of the world based on the genetic pool there. For example it is extremely rare in an Asian population but would be more common in a Nordic gene pool. Green eyes are based on parent’s genes, where as Down syndrome can occur to any population regardless of parent’s genes. I do however like the concept you are going with as Down syndrome is part of who someone is just like red hair, blue eyes, how tall you are, etc. It is not something that can be “healed.” Being a part of the medical community myself I think one of the best outreaches is letting them know your group exists and you are willing to talk to any parent about Down syndrome. I don’t think Ob’s realize there is a parent population willing to support new moms through the diagnosis. They also refer to genetic counselors to do more of the talking and know little about Down syndrome outside of the medical concerns. I find it heartbreaking that most Ob’s assume people will want to terminate once they find out. Another sad statistic is that typical children end up being terminated through the process as well. A UK resource states that 400 typical children are terminated each year due to having an increase risk of Down syndrome. Now that ACOG recommends testing for every woman and not just those over 35 I fear what will happen as more woman learn there is an increased risk with their baby.

      • I can’t find the site now, but I’ve read that it’s 10% in the US.  In Iceland it’s 87-92% with green or BLUE, and I saw that Turkey has the highest rate of green eyes at 20%.  In darker people, not middle eastern, is rarest (African, Hispanic, etc), in Afghanistan it’s fairly common… 
        The reason it’s only 10% here is that most of the green eyed genes come from Ireland and German in the US, and although we are a large percentage, we ALL have different brown eyed genes mixed in, and they take over.
        Then again, the statistic that said 10% said there are 100,000 green eyed people in the US… is 100,000 10% of our population?  The number I found for US population in 311,000,000, it’s 3.2%, so no.  There doesn’t seem to be a definite percentage for this. 
        I wonder if you’d even be able to find statistics for DS PREGNANCIES as opposed to DS births, as many choose to “opt out” of the “trouble.”  You’d probably have to search terminations and then births.  :(

      • Pamela Reyes says:

        It is such a heartache how families are construed as “it didn’t happen from our family.” The pediatrican who came in to see our baby after he was born flatly told us, “your child is mongoloid, and his tongue will stick out forever, if you should like to place him in an orphange I can set it up for ya’ll. She also told us in front of the mother I shared a room with. When my doctor who deliverd Eric came in, we told him what the pediatrician said. He asked our permission to let her go. Well, we heard that he gave her a good chewing out and told her we no longer wanted her for our doctor. I know that this doesn’t happen all of the time, but parents need to be talked to with compassion once they suspect that they have delivered a Down Syndrome baby. We have loved Eric from the moment we laid eyes on him. He has been an extra special inspiration in our family. I feel sorry for parents who do not have a Down Syndrome child as they are missing out on life’s most wonderful gift from God.

  5. I love this blog. I found you on twitter . My little sweetheart who has Down syndrome is 3 years old now and I would have loved reading this blog when he was first born, although it obviously didn’t exist then. Even though I know I didn’t do anything to cause his Down syndrome, it is nice to be reminded of that again because sometimes that thought creeps back into my head. I facilitate a Down syndrome community group in our city for Mile High Down syndrome Association. I’m going to tell all the parents in my group about this blog! Thanks for sharing.

    • @Meredith,

      So cool that you found our blog! What’s your “little sweetheart’s” name?

      Also we go to Denver at least once a year to visit family, maybe we can meet up one day!

  6. Victoria Proffitt says:

    I’m so thankful that Target has used a model that just happens to have Down Syndrome. I want my little girl to know she is not alone in this world. I want her to see that other kids with Down Syndrome can do the same things other children do. I wish there was a target in the Bluefield , West Virginia area so I could support it. I also loved the blog one lady posted about having a child with Down Syndrome is not your fault. Sometimes when I go out in public I feel I have to justify my child’s right to be in this world and my decision to have her. I was 36 when I got pregnant with her. I always feel I caused it by waiting so long to have her, then I realize the number of children born to parents over 36 that are completely normal. I also realize the number of children with Down Syndrome that are born to parents under 35. I learned in fact the egg cell my daughter was conceived from was actually in me when my mother was pregnant with me. That egg cell could of already had the extra chromosome then. We consulted a geneticist to see what the odds of having another child with Down Syndrome would be and its no higher than for anyone else of the same age.

    • Nordstrom also has a model with DS.  I saw him in a catalogue about two or three months ago, maybe even around Christmas.
      This was after they boasted about having someone disabled in their catalogue… the person was deaf, so you obviously couldn’t TELL.
      There’s a girl with DS on Glee (I think, I don’t watch it).  A boy on Secret Life of the American Teenager (he’s quite a firecracker). 

    • Pamela Reyes says:

      Hi Victoria, wasn’t aware that Target uses Down Syndrome children as models. I will make a sincere effort to shop their more. I was only 26 when I had my son Eric. We also went to a gentecist at Texas Children’s in Houston, Texas. We were told that our child was no mistake and that I carried the gene. We were also told that I carried the gene when I was conceived. I have known moms who have birthed their Down Syndrome child at an early age of 17 and 19 years old. I agree with you, that age is not a factor. So glad to be a part of this blog. It is so important to get information from the parents rather than getting it from someone who has heard this and heard that. I bet your child is beautiful.

  7. Noah is just so stinkin CUTE!!!!!!!!!!! and i like your blog :)

  8. libby Holmes says:

    Thanks for making me cry! I dont know what i’d do with out you guys!! you are such a blessing to me and my family….thanks and love you guys!!!

  9. “85% of children born with Down Syndrome are diagnosed after delivery” The heart-breaking truth behind that statistic is that more than 90% of women who receive a pre-natal diagnosis of Down’s choose/are pressured into terminating.  I look at these beautiful children and I cannot imagine not seeing them as especially blessed and specially created by God.  God bless!

  10. You guys are wonderful!! I love what you have done for so many parents that for so long have felt that they are alone in the world. My daughter is 12 now and I would not change anything for the life of me. I was 21 when i had her and my (husband now) and I were not married at the time. We had doctor after doctor come to us after her downs was confirmed ask us if we were going to keep her. It took us years to understand that many people give up their babies because they are not perfect. Are you kidding me?? Who is perfect? We did have the worst social worker in history. She would come to the hospital when she knew that I was alone and tell me that I will need to put my daughter in a home one day. Are you kidding me, i dont even have her home yet.
    I am so glad that this day in age that we can come together and know that we are not alone and that if you are going through it chances are that someone else is too.
    Thank you so much for all that you have done for me so far and I hope that I can help any parent for family member or teacher for that fact with anything that i can.
    Thank you, Thank you, Thank you!!
    Our daughter Taylor has made me a better person and I know that she is a very special gift from GOD.

  11. Cherokeevero says:

    Noah is beautiful. I remember when my son Adam was born, my pediatrician diagnosed him after birth and of course my feelings and thoughts were what did I do wrong. We mothers blame ourselves, but then my next worry was what us my husband going to say and do. Will he blame me and leave me, not want anything to do with us. I tell you I was a new Christian at the time, when I met my husband he lead to our savior Jesus Christ. When I told him over the phone, he was so angry, at the fact that I was told of this information without him. The Dr. Didn’t wait for both us to be together to tell us. The next thing my husband said was “God gave this child to us because we are special parents to care for him, and God doesn’t give anything you can’t handle” these words just took the biggest worry of Me and gave me comfort that nothing was going to keep us from doing and being the best parents for Adam, him being my first child I gave him my total attention and we planned for a little brother or sister, for years later Vincent was born, not Downs Syndrome, but I was told I had a high percentage of caring another child with Downs. Our attitude was if that is What God wants, so be it. We love our boys and God is good.

  12. Knit together just right… just like my granddaughter.  I love how you put this.

    • Thanks! Thankfully God is the one that “put it” that way…I just wrote what He wrote!

      You sound like a great grandmother! How is your grand daughter doing?

  13. You are a very inspirational family!

  14. Patricia Pender says:

    Hi.  I’ve been popping into different parts of this blog sporadically and adding some comments, even if I go off on some other tangent!:)  I didn’t realize at first that Noah’s Mom is a pediatrician herself so in retrospect, I am really thrown by how she was treated after Noah’s birth…thinking also that she would have had some experience with dealing with new parents of SN babies already.

    While I was still carrying my DS son (now 9), I watched those medical shows of babies born with all sorts of problems…I’m kinda weird and detached about  the world around me, which I think keeps me from the deep grief that Our Lord must feel as He watches us human beings deal with life, and struggle with what we think we should have control over…and being able to predict anything is really an illusion.

    Just look to nature to see that God creates all sorts of strange creatures and look at societies across the globe and closer to home for those who have the right to exist in whatever bizarre world they live in.  Life is not meant to be predictable.  I had been advised to create a “schedule” for my son so that he would feel assured/comforted by knowing what comes next.  I strongly disagree with those kind of artificial tactics since many times life intervenes.  Jim may go to sleep at a regular time…but he may wake up at 3am, sometimes for a while and sometimes he stays up until the next bedtime…which means I have to be up as well. 

    Those of you with “normal” kids may have the same problems (and many others) but at least you can talk to your kid.  My son is nonverbal and doesn’t “get” the normal expectations but he has learned to do many things and deals well with picture prompts and some sign language.  The comments I have gotten about him have been more on the line of..”he’s taught me so much more than I have taught him”.  I believe in the concept of Karma and that our souls are meant to grow as a result of our life experiences…and God deliberately created some people with a “little extra” to alter the paths for some of us.

    We parents of kiddoes with DS and other special needs will naturally seek out support.  The comment about OB-GYN’s not being aware of what is available from other parents is something that would be important as a campaign to share thru emails to these docs and in places where expectant parents would see flyers.  Geneticists should provide these resources as well.  In fact, they should learn more about what is out there before having any business talking to any pregnant woman.  Mine didn’t, by the way.  She actually suggested I go to another state that allows late term abortions!  This same lady saw my son a day or so after his birth and called to tell me how beautiful he is.  Bizarre!

    Here’s a blast from the past…July 4th 2003 boat decorating competition with Jim on his (late-2/19/07) Grandpa’s lap.  I was surprised Jim put up with the hat and beard.

  15. Oh man wish you was here 4 years ago ..it was tuff all on my own and then the doc telling me that it was mostly because of me…and all i keep hearing in my head was me me me! I did this to my son!…n having nobody around to have a sholder to cry to and everything oh man…but thank God for you and your wife i wouldnt want someone to feel alone and lost like i did 4 years ago! GOOD JOB KEEP DOING WHAT YOU DO!

  16. I am so…what’s the word…thankful? relieved? happy?…to read this. When we first heard “Down syndrome” we had all the same questions. I have come to know that God gave us Otto on purpose, to teach us love. His kind of love, the kind that surpasses all understanding. Otto doesn’t just look at me, he stares deep into my soul, searching, verifying that I love him. Once he sees the answer is yes, his whole body smiles back at me. A gift from God, a lesson from God indeed.

  17. patricia says:

    I agree with you. there is a fault or a mistake is only a genetic event. at first I thought “I’m a good person why my son is not healthy? but now I wonder no more because the love I feel for him is much bigger than any sindrome.he’s our life is fantastic! Noah smiles since was he’s born is beautiful sweet and funny. I just want the best for him and we’ll be together forever. I love my son is my gift and i don’t wish he different is so perfect ! I just hope he get out more as healthy as possible <3 !!!(sorry i'm italian i hope you understanding my words!!)

  18. Incredible son…proud of you amazing parents! :D I support adults with developmental disabilities and each and every individual is absolutely amazing and talented! Congrats to your precious baby!

  19. theresa says:

    i have a ds grandson that will be 11 years old this october he is a twin but the other one is ok.my grandson is the love of my life,he does not verbaly talk but you know what he is saying by the look in his eyes,he does some hand language,but he is so so precious,i feel god wanted me to have something extra special in my life so he sent me this special delivery called zackery he is really special

  20. karen shutts says:

    What a wonderful inspirational page especially for new parents. My DS. Son is 28 and I was 19 when I had him. I always believd he was a gift from God. I just wonder why they say it happens to “older women”. Also 7 yrs later I had twins b/g. Went on to have 3 more after that!! Danny has always brought so mucH Joy to my life and everyone
    Else’s he has touched. I just can’t imagine DS becoming extinct!!

    eleses he has touched. I just cannot i

  21. Hi Noah!!~~ :))

    I actually will be presenting my 7 mth old baby Ken with DS case study and I will be Introducing Noah’s story to the class tomorrow. I’m excited!! is a beautiful story and the most beautiful thing about it is, you guys stay so grounded and have the courage to let us “the public” into your lives. THANK YOU :))

  22. Karleigh Boran says:

    My mom told me whenever I was born the doctors say that I almost have down syndrome , but I am in special ed classses

  23. AUMI SYAHIDAH says:

    Dear, thank you for having this post in your blog. i was told by the OB and the Peads that the maternal caused a child to have Down syndrome. i find it a bit offended but I just kept quiet about it, as i think they know better. Living with the guilt is not easy and living in a place where DS is a taboo, is even harder. I am trying my best to help my DS child, and I am positive about it. Reading this post really light up my heart. I know i did not cause my child to have Down Syndrome. :)

  24. Sharon D Stetson says:

    When my sister was born with Down Syndrome in 1972, it was assumed that the mother was at “fault” for having produced an “abnormal” baby. The hospital staff isolated her from other mothers and Marcia was kept in the corner away from the other newborns. They did not offer to take photos of her as a newborn. I think this created a sense of guilt in my mother that never really went away.

  25. Milan's mom says:

    I did it! I have a tons of love and of course I gave him the extra chromo. How can you explain a little four year old that can make your life so intense? Full with happiness and excitement, because the extra chromo! LOVE THE WAY MILAN IS, after all extra chromo means to me more,extra,mas,……….

  26. Gloria Shepherd says:

    I DID think it was my fault!
    I remember when Shane was born, couple hours later my OB came in and said “we think he might have DS”. They weren’t sure because I myself have slightly slanted eyes, and during the delivery he was …stuck (for lack of a better word) in the birthing canal, right around the part of the head where the eyes are, so they were thinking maybe his eyes were just “swollen.”
    And I said- foolishly cuz I didn’t know any better- “But Black babies don’t get DS!”
    LOL I can laugh about it now, but then I just cried buckets. I apologized (APOLOGIZED!!) to his dad, because I wanted to give him a perfect baby… I felt like I had failed him…
    I thought it was the mix of Chinese food and cheap champagne I’d had on my birthday, the day I conceived.
    I thought it was because I didn’t take my vitamins everyday through the pregnancy.
    I thought it was because I worked in a cosmetics dept and I inhaled fragrances all day while I worked.
    When something unexpected like this happens you look for reasons to explain it.
    Needless to say, after learning about ‘the causes’ and explaining to family members and friends who think you were drinking and drugging because THAT’S what causes ‘birth defects’ in babies, understanding that it was something that happened because of the make up of the cells during conception was a welcome thing.
    It wasn’t my fault.
    It wasn’t his dad’s fault.
    It wasn’t even a ‘fault’ just one of those things that happen and make you a better person for it.

  27. Concise. Clear. CORRECT!
    I love how you more or less order your readers to NOT FEEL GUILTY! It’s important sometimes for people to hear that repeatedly. I know I did (regarding my daughter who has Cerebral Palsy).
    I like your blog because it’s got a lot of great information but really, I love to see that adorable Noah! P.S. that’s my most favorite-ist name in the whole world (I have a Noah too!)

  28. I liked this post, but I think it impotant to not feel guilty, and mourn the baby you expected. We found out at 13 weeks. And i remember my best friend tell me that she thought my whole life wAs preparation for Keeley. She also reminded me that all the addiction that runs rampant through my family, would likely not impact her. At the end of the day, it doesn’t matter what Keeley has, we are blessed and privledged to have a roll

  29. I love this post! I do know that I probably caused that little chromosome to stick on…..but frankly….we think that our daughter Josie was made the way she was just for us! We lost five babies along the way to having our third daughter. Two were from rare trisomies….so when we knew we had the increased risk….I just figured it was what it was. I did not do any invasive testing even though one OB tried to convince me to do the amnio (I politely declined several times to the point that she finally stopped pressuring me….not my regular OB nor my maternal fetal medicine specialist who were both men and both very supportive….it was the one woman who pressured it) She actually tried to tell me how safe it was when I confronted her with two people I know who delivered at 25 wks due to a ruptured amniotic sac due to a botched amnio….and another woman who miscarried after the amnio….that shut her up. My say was that if she had DS….why wold I want to put complications of a possible premature birth on top of her. She looked great in the ultrasound….let her be! We were thrilled to have her. We actually were the ones who diagnosed her in the hospital….the staff didn’t notice. When they did diagnose her officially they acted weird for about three days. I think they were expecting me to break down crying or something. We were thrilled beyond belief to have her! The social worker finally met with me and realized that we really were “good to go”! I know my mother was a it negative throughout the pregnancy….but once she met Josie….her heart was melted to mush! Everybody just adores her and love being with her. I plan on having her do everything her sisters do to the best of her individual ability….just as you would with any child! As for guilt…..no….I do not have guilt. We were blessed to have her and with our backgrounds in special education…..we are oh school administrators….I think she chose us to be her parents. Not just for her….but to help us make a better world for all children who have different needs.

  30. Thank you so much for this article. It has helped me understand and know it is not my fault. I especially like and believe that God did choose the egg and has big plans for my family!

    • You are right about that! A lot of people want to know what causes Down syndrome, and the truth is you or I having nothing to do with it.

      How is your child doing today?

  31. Came across this site while reseraching Down Syndome for an informational article. Couldn’t help falling in love with Noah. May God bless him :)… after all, he is one of His angels that He sent on earth to teach us mortals what love and compassion is :)

  32. Abi Senami says:

    Hi Noah’s Mum and Dad, I am blessed to have found your blog a few days ago. Wonderful! My extra special cookie is 4 later this month and I am thankful. Grateful that doctors made me understand after his birth that it was not my fault or anybody else’s. Yes, there was the initial shock, the “why me?” questions, the neglect, denial of paternity and final abandonment by his dad and my husband…but I stand on the truth that “ALL things work together for good”. Josiah is a huge blessing, pretty spoiled by his 6yr old sister as well.
    I want to stop welling up every time I read your blog though….these children really have a special way of touching our lives, don’t they?

    • Abi, Thanks so much for your comment! Glad that you know there is nothing you “did” to cause your child to be born with Down syndrome.

      We’re so glad you found our blog! How did you come across it? Do you have any other children?

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