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When You Find Out Your Baby Has Down Syndrome

by McKenna on September 30, 2007
category: Down syndrome,Inspiration,Pregnancy

I wish I could tell you in a five step article what happens when you find out your baby has 095_12a.JPG Down syndrome, but every situation and every person is so different that the best I can do is tell you my experience.

On the day of our sonogram to find out the sex of our very first child, my husband, the two first-time grandmas-to-be and I anxiously waited in the waiting room for my sonogram. We first had the obligatory weigh-in, blood pressure check, and “how have you been feeling” with the nurse. Then the doctor came in. She asked me how I was feeling and I explained to her my eagerness to find out the sex of our baby. She first wanted to share with me the results of my quad screen. I’ll never forget her words, “It looks like your baby has an elevated chance of having Down syndrome.” Everyone in the room was shocked, except for me. I knew how unreliable those screening tests were, besides I was only 21 years old! I kept reassuring my husband that those tests meant nothing. We went back to the waiting room, and I was still my upbeat perky self waiting for the sonogram tech to call us back. I wanted my mini-McKenna…I wanted a girl so badly!!

Finally, the sonogram! The technician was conducting the sonogram and measuring all kinds of things on the baby. I kept thinking to myself, “come on already, look between the legs!” The technician then told us she wanted the doctor to look at some things. The OB walked in, looked at the screen, and said, “I have to be honest. This concerns me” as she gently touched my leg. Not only did my quad screen point to the baby having Down syndrome, portrait4.jpg but there were many physical findings on the sonogram as well. Through a cloud of tears and emotion, we found out we were having a girl, but no longer was she going to be a mini-McKenna. She was going to be different than me. She wasn’t going to look like me. She wasn’t going to act like me. Along with my picture with the arrow pointing between her legs, I was given sonogram pictures with measurements of the back of her neck, her femur, her nasal bridge…all measurements that said my baby wasn’t going to be normal. We followed up with a series of level II sonograms. Although we never had the amnio which would have confirmed Down syndrome, the doctors were sure my baby had Down syndrome when they later found a heart defect that is almost exclusive to babies with Down syndrome. My husband and I held on to the small chance that she didn’t have Down syndrome, but tried to prepare for that possibility.

My 6 hour labor and delivery went off without a hitch. As soon as I saw her, I knew she had Down syndrome because I had studied every picture of a newborn with Down syndrome that I could find. Google and I became very close, almost too close, during the remainder of my pregnancy. pa140051.JPG

For a mother, it is the worst thing in the world to hear that something may be wrong with your baby. The guilt, the tears, and the “why me’s” flood every part of you. Then the compassion for your child takes over. The “why me’s” turns into “why her” and the tears become tears for your baby, but the guilt seems to remain. “What if I didn’t have that margarita before I knew I was pregnant.” “When anyone asked if I wanted a boy or a girl, I immediately said I wanted a girl-I should have said I didn’t care as long as the baby was healthy!” “I slept on my right side instead of my left.” “If only I would have eaten better and not gained those forty pounds.” “If only I would have remembered to take my prenatal vitamin every day.” “Everyone must think there’s something wrong with my husband and I.” “Does my husband think this is my fault?” “Is it his fault?”

My daughter has Down syndrome, but that is a very small part of who she is. My daughter is a very unique, original little girl with her own personality. She has the persistence of a mule (and of her mother), my blonde hair and my father’s hazel eyes. She has short stubby toes like my sister and mother and has very straight fine hair like my husband and his family. She loves music almost more than Barney and prefers chocolate milk over apple juice. She is the best big sister in the world, until her baby brother takes a toy that she wants.

Are there things I go through that other mothers don’t have to – yes. Are there things my daughter goes through that other little girls don’t have to go through – yes. Do I worry about my little girl- what mother doesn’t? But at the end of the day, I got more than a mini-McKenna and I wouldn’t change anything about my precious little girl – not even her extra 21st chromosome!  For an exciting update on Down syndrome in our family, click here!!

44 Responses to When You Find Out Your Baby Has Down Syndrome

  • Gravatar
    Comment by Jenna
    October 1, 2007 @ 1:35 am

    beautifully written!!!

  • Comment by Amanda
    October 1, 2007 @ 12:03 pm

    I just read your story again and I still think it is a beautiful story! Thanks for sharing your experience with the world.

  • Gravatar
    Comment by Kristi
    October 1, 2007 @ 8:53 pm

    Your story is one of hope and it is very inspiring. Thanks for sharing. :)

  • Gravatar
    Comment by Angela
    October 2, 2007 @ 10:08 pm

    You truly have a gift in your little girl, and a gift with words. Thank you for sharing your story with honosty and candor.

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    Comment by Amy
    October 5, 2007 @ 6:29 pm

    How inspiring McKenna! What a beautiful way to assure pregnant women that there are blessings in all things. Thank you!

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    Comment by Trina
    October 7, 2007 @ 7:33 pm

    That is very honest and you truly show what a mothers love is about. Not what color hair, eyes, or how tall the child will be but what God wants for us and the child. She is a beautiful and a blessing to know and love.

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    Comment by Mary
    October 10, 2007 @ 7:57 am

    Thank you for sharing your story with me, my friend told me about this website because I just found out that my quad screening came back positive and I have to go for the ultra sound so they can measure the baby’s organs and head and neck. My doctor gave me (per my blood) a 1 and 200 chance that the baby can be down syndrome. I am scared but I am also thankful that I have this opportunity to have a baby, my husband and I have been trying for a long time.

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    Comment by sharon
    October 17, 2007 @ 6:33 pm

    hello, your story was so touching i myself am going to have amnio my blood test said i was high risk i am 35 we had the ultra sound today 17 weeks and they said all looks normal but still want me to have the amnio. your was so great to hear and i wish you all the best .hugs and kisses. may god contunie to bless you….

  • Gravatar
    Comment by Vanessa Lyra
    July 18, 2008 @ 6:04 pm

    Thank you… from me and my baby that I love more than ever!!!
    17wks preg

  • Comment by McKenna
    July 20, 2008 @ 9:05 pm

    Hi Vanessa,
    Congratulations on your upcoming arrival!!! I’m glad this post encouraged you! I tried sending you an email, but it was returned. Please let me know if I can be of any advice! I am assuming that you are having a child with Down syndrome. If so, I strongly encourage you to join an online forum I belong to: http://www.downsyn.com/phpbb2/index.php ~mckenna

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    Comment by andrea mcroberts
    August 31, 2008 @ 5:05 pm

    your post was so touching , it brings out all my emotions 11 months ago when my son was born with down syndrome we did not know and were told 3 hours after delivery of his condition. I also went from why me to why him in so many hours and now 11 hard months on i also wouldnt change him for the world (not even that extra chromosone) he has fought for his life with bronchiolitis and pneumonia due to his 2 big holes in his heart, he had open heart surgery in february which was a huge success and had a stomach peg surgically fitted in july 08 to help his feeding which also has been a huge success and through it all he gives us a smile that would light the room. Since Carter has came into our family he has made our life so much better and to see that big smile from the cot in the morning makes all the long lengthy hospital visits worthwhile!!

  • Gravatar
    Comment by Shelly
    September 6, 2008 @ 8:18 am

    Thank you for sharing your experience. My quad screening gave us a 1 and 16 chance of Down’s and we are now waiting the results of my amnio. We plan on having the baby either way but your story will help calm our fears if we get the call telling us our little one has Down’s. Best wishes to you and your family!

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    Comment by annonymous
    September 11, 2008 @ 11:23 am

    I just had my 20 week ultrasound, the first of any tests being that I am only 25, and had a normal pregnancy with my first, and no nasal bone was to be seen. The doctors told me it is likely the baby has down’s syndrome, and want to see me back in a month for another ultrasound. I feel like this is going to be the longest month of my life. I feel like I just want to know, so that I can start emersing myself in all of the things I can learn before the baby comes, or forget about the whole thing and finish all of the things that have been neglected due to morning sickness. Reading your story helps me, because I know that I will love this baby equally whatever the results, but there are fears that come along with it all. Will the baby be healthy, or need multiple surgeries, will the child be made fun of, etc. etc. So reading a story like yours reminds me that everything is going to be ok. Thank you for sharing.

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    Comment by Anne
    September 16, 2008 @ 5:27 pm

    Hi dear this is very moving article. I once again recolled my mother.My sister has down syndrome and my mom felt in the same way u felt. Yor are wonderful mother for wonderful baby.God bless u both. take care

  • Gravatar
    Comment by Tanya
    September 21, 2008 @ 4:26 am

    McKenna,
    Your story touched me in so many ways. not only am I in the same boat with my quad coming back abnormal but Monday I go for my sonogram as well. I have 2 beautiful children a son who is 15 and a daughter that will be 2 in November but now I have a baby that could possibly have downs, I’m so scared and all of those same exact feelings have flooded me. Thanks for letting me know I’m not the only one who feels the Why me and Maybe I shouldn’t have done this or that.

  • Gravatar
    Comment by Darryl Evans
    October 28, 2008 @ 2:24 pm

    Iwas wounderinf if i could use your stroy please.
    I am doing video story telling. the topic is “what it would be like to find out during pregnancie that you child has down syndrome”.
    I have no expirience of this first hand, Your story is complelling and i was woundering if u would mind me using it and the photos?

  • Gravatar
    Comment by Veronica
    November 14, 2008 @ 1:24 am

    McKenna, congrats on your baby she’s beautiful, my sister too had a daughter with downs, but unlike you nothing was revield before birth, my sister had a normal pregnancy, and it wasn’t until Grace was born the doctors thought she had downs, but, 8 months later and Grace has overcome so much, from 6 weeks in the NICU, to open heart surgery and she’s just perfect, she’s cooing and baby talking, and the most beautiful baby i have ever seen (aside from my own) she’s the most amazing person i have ever met, and she’s only 8 months old, i have several pictures posted of her on my myspace, you should come look, she’s just a doll…..congrats again on your beautiful lil girl, and thanks for keeping the story posted, not enough people know about downs and how you get it, for the first few days everyone was asking well…. “what did your sister do to cause this” no one know’s its uncontrollable…..keep in touch Veronica

  • Gravatar
    Comment by Amanda
    December 11, 2008 @ 3:30 pm

    your story is very touching. i am doing some research on this disease and i would like to know if you have any information on how long into your pregnany you can find out the likliness of your child having this syndrome.

  • Gravatar
    Comment by Courtney
    December 11, 2008 @ 7:56 pm

    I just found out on Monday that my triple screen came back for down syndrome. I read this in hopes of an answer or a plan. You gave me sooo much more. When reading this I became teary eyed and got goose bumps all over. In this short little article you’ve expressed so much love that it overwhelmed me. You gave me the answer that I need but wasn’t searching for. It will be my child and I will love it no matter what the outcome. You are a very wonderful mother! God bless and I hope your lives are filled with love.

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    Comment by Merry Gale
    February 5, 2009 @ 9:50 pm

    Thank you for your story. It is so much like my own! I remember all the “what if’s” and the grief that my husband and I both shared before my daughter’s birth. I even remember being so angry!! My daughter is now 2 and she is our pride and joy! My husband and I now can’t even believe we cried when we learned about her condition. We could never have imagined how wonderful it would be to have her. I truley thank God for giving her to me and wouldn’t want her to be anyone other than who she is. Mira is really no different than her brothers and sisters – she’s just one of the crowd. By the way, your daughter is beautiful.

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    Comment by Jessica
    February 10, 2009 @ 9:16 pm

    Your story and daughter are both so beautiful. As an aunt of a DS child, I very much believe that these special children teach us such a uique type of love and acceptance. Best of luck to you and your family during the many years of joy that I’m positive you will experience together!

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    Comment by Rachael
    February 20, 2009 @ 8:13 am

    You are a brave woman. I had a boy Dec.13 2007 who lived 20 mins he had trisomey 16. I am so proud of your love for your daughter.

  • Gravatar
    Comment by Cindy
    February 21, 2009 @ 8:32 am

    This story moved me to tears and was beautifully written. I thank you for your story. You are an amazing mother and your daughter is beautiful! Much love to you and your whole family.

  • Gravatar
    Comment by Leslie
    February 22, 2009 @ 3:00 am

    Your story brought back a flood of emotions and thoughts. My 4 1/2 yr old son has downs and was recently diagnosed with type 1 diabetes. I barely remember all those feelings that soon follow “we think your baby has down syndrome”. Ryan is THE light of my life, he is amazing and perfect. I love him because of and in spite of his extra chromosome. I have learned things, seen things, and felt things that I never would have otherwise. He is nothing short of a gift from God. p.s. your little girl is beautiful!

  • Gravatar
    Comment by aviva
    March 21, 2009 @ 4:35 pm

    Thank you so much for sharing your touching and special story. Ur daughter is a real beauty!! And I hope god continues to shower your family with love!

    I’m doing a research on mothers of babies with a syndrome and was hoping you could list positive support you received on your journey and also list negative situations that happened.

    Thank you and all the best,

    Aviva, Belgium

  • Gravatar
    Comment by Colleen
    April 1, 2009 @ 10:16 pm

    What a beautifully written story, McKenna. I have a daughter with Ds who is about to turn 7 soon and I remember the fears and anxiety when she was first born. I didn’t have a quad screen or amnio but I did have several sonograms, so I am certain the doctors knew she had Ds. She is a wonderful little girl and I cannot imagine life without her. I’m sure you feel the same about your mini-McKenna.

  • Gravatar
    Comment by Marina
    May 25, 2009 @ 1:35 pm

    hi I just want to let you know that I used some photos from your blog in a article I’m working on about families with children with Down Syndrome.
    i was also inspired by what you say here so for all that… thank you

  • Gravatar
    Comment by oneilia
    May 28, 2009 @ 1:08 pm

    hi! im so touched with your story and how cute your little girl came out to be she is an angeln and i hope she has a great life .GOOD LUCK

  • Gravatar
    Comment by Chelle
    June 21, 2009 @ 12:24 pm

    My brother found out just hours ago that his newborn might have downs syndrome. The baby’s symptoms seem to be so conflicting that right now it is hard to tell. He does have a rounded face, and a simian crease, but his heart is healthy and his muscles are stong. So instead of enjoying this time at the hospital, everyone is staring at him, analyzing everything feature and movement to try to find some answers. In time the blood work will come back, but right now the new parents are just a mess of emotions, joy over the birth of a child they wanted for 5 years, confusion over what his fate might be. I know that children with downs syndrome can live fairly normal lives and that this baby will be loved no matter what, but it’s hard not to worry when it seems something else might be wrong all together.
    Like you, google had become my best freind, as I feel so helpless. Thanks for sharing your positive story. Right now my little bro needs all of that he can get!

  • Gravatar
    Comment by sinead
    August 31, 2009 @ 6:43 am

    hi i love your story it really touched me cause everything you spoke off was exactly what i felt when my daughter daisy was born on march 2008 and i didnt no before she was born but if someone only told me the good things instead of focusing on the negative things i would never have felt the way i did back then but to look at our life 18 months on she is the best thing that ever happened to our family and we wouldnt change her for the world and she is just daisy and not what the book says she will be she is clever,cute, very happy, and so funny that there is never a dull day with her around.

  • Gravatar
    Comment by Xtie
    January 30, 2012 @ 7:41 am

    Just been inspired by this peace and other comment. Thank God for sending me to this page

  • Gravatar
    Comment by Nicole
    February 17, 2012 @ 9:43 pm

    I believe that god does things for a reason. He chose u to be her family. He only puts on u as much as he thinks u can handle and I believe he thought u would handle this well. I work with special need children in the school system and would not change my job for the world!!!! I luv to see their faces light up when they see me first thing in the morning. It takes special people to be with these kind of children and I believe god chooses them wisely. He makes an imprint not only on our lives but theirs as well.

  • Gravatar
    Comment by danielle
    March 8, 2012 @ 11:26 am

    Your story is amazing, please keep sharing it!

  • Gravatar
    Comment by Savanna
    April 30, 2012 @ 12:51 pm

    This has helped me so much more mentally. I’m 19 years old, and was just informed that my blood test came back positive for down syndrome! I still have way more appointments to go to for me to find out for sure.. But, this put my mind at ease. Wish there was more stories like this, and your daughter is beautiful(:

  • Gravatar
    Comment by harminder khatri
    April 30, 2012 @ 8:34 pm

    it was very painful to have son with downs on 21 march 2011. its very easy to confirm it very difficult to accept….. u r a brave lady that u gave birth to u daughter even after knowing in advance…….. really u r great but all are not so brave…….

  • Gravatar
    Comment by Michelle
    May 10, 2012 @ 5:30 pm

    Hi, I am putting together a book about Down Syndrome. Well, it’s actually a collection of poems and short stories written by people who have been affected by Down Syndrome in some part of their lives.

    If you or anyone else would like to submit a piece to be published in the book, here are the details:

    All proceeds from the book will be donated to Gifts from the Heart for Downs, a nonprofit organization that grants wishes for people of all ages (OK, 2 and older) with Down Syndrome.

    Before you submit, please have someone read it for spelling, grammar, punctuation, word usage (here, hear) etc… I will do some editing, but I won’t catch everything, and you’ll want it to be error free – your name will be on it!

    You retain the copyright to your writing. The organization will hold the copyright to the book as a whole. You are free to submit your writing to other organizations, magazines, blogs, contests, etc…

    You are free to do some “advertising” of your own before and after your piece. For example, right before your piece, you may want a dedication, such as, “This story is dedicated to my sister, Angela, mom to a beautiful child that happens to have Downs Syndrome.” After your writing, you are free to include your own byline of course, along with your website, or anything else you’d like.

    I would like to have at least 40 submissions, and my goal is to raise at least $1,000 to fulfill wishes.

    Please submit by June 1, 2012! Thank you!

  • Gravatar
    Comment by april
    June 21, 2012 @ 10:33 am

    Hi, this story is truly awesome!! I myself just had a beautiful baby boy on the 12th of this month, we were informed 3 or so hours after his birth that he had down syndrome. It was quite a shock to everyone especially me and his father. All the tests done during my pregnancy came back normal and everything was going great! I didn’t even worry about this… the only things running through my mind were.. “What’s he going to look like?”, “Whose eyes, lips, hands, feet, face, personality, temper, laugh, smile, etc is he going to have?, ” What sports will he play?, Will he be into sports as much as me and his dad are? , Will he be athletic?, Will he be tall? all these raced through my mind for 9 months, but never did i worry about down syndrome. when we found out it was very emotional we all cried. I questioned if it was my fault, how could God do this to us? What did i do wrong? Then it quickly changed to is my baby boy going to be alright, what health problems is he going to have? will he be able to eat well, talk, enjoy his life? i am only 21 and would have never thought this would happen but obviously there is a meaning and purpose for him on this earth. He is still and will always be my precious angle, my love, my first baby boy! i will love him unconditionally and do all i can to raise him into a bright, loving, amazing little man . I know the road ahead is going to be hard and there are going to be times where i feel like i have failed and want to give up but that will not be an option for me. You have given me hope and reassurance that it will all be okay and that love conquers everything and theres nothing i wouldn’t do for my child. God bless you & your family!

  • Gravatar
    Comment by Jennifer
    June 28, 2012 @ 3:23 pm

    I am pregnant as well and I got a call from my ob dr saying my levels came back high. My chances are 1-10. I read your story and it really touched me. Your daughter is so pretty. I elected not to have the additional test done, because either way I will love my little girl regardless of what she may have. Thanks for sharing your story.

  • Gravatar
    Comment by Allison
    September 11, 2012 @ 7:30 pm

    I wonder why all people seem to think that girls are mini-moms and boys are mini-dads. Frankly, I am a female and I look like my dad. Always have. Everyone knows it. My mom is a Shirley. And I’m not a mini-Shirley. Not that I missed the point of this well-written and moving article.

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    Comment by Maha
    September 28, 2012 @ 1:50 pm

    hi i am sooo soo touched by your story that even though i m in risk of having a baby with down syndrome i feel that i am not alone. the way you describe you feelings is heart touching. very beautifully written. i trully wish the best of the best for you n you daughter. i want to n then i dont want to do the amino test. i want to because i just wana get itover with n find out for sure sure if its a yes or a no. and then the worrying starts on how n what i m going to do in the future. i m at the moment 22.2 weeks pregnant. the doc gave me a copy of the pics of the ultrasound that i got done today. i can seem to notice the facial features onit. after hearing that she wants me to go to get the amino test done i looked at the pics again n again n again n i still m confused. if there is anything that you can tellme that will be a guide forme i would appreciate it. this is my third pregnancy. the son is diagnosed with being on the spectrum pdd-noz. and is in the early intervention progtam. and he is an amazing child. really moving forward which makes me happy. very smart n intelligent n just great n is showing huge amount of progress. after i have a baby girl who is so far normal, may god keep her that way… n now off course this pregnancy has itsown tole onme.
    looking forward to hearing from you.
    thank you for sharing your story. n god bless you

  • Gravatar
    Comment by sage aidyl
    October 6, 2012 @ 4:18 pm

    DON NOT BE AFRAID. My baby is now 30 yrs. old, almost 31. I was only 27 at the time and it was quite a surpise to handle. All the struggles, all the ignorant people we have engaged with through her life, are all just part of her story. Like the hardships so called “normal” individuals encounter, this is life.

    I have learned more from my girl than I could ever teach her. I have received more love from her than anyone on this earth could or has ever given me.

    God Bless you all and remember that your child will always be the most unique person you will ever know.

    Be proud of him or her for Down Syndrome is just another part of who your baby is.
    All the people who don’t get it, just forgive them. They don’t know what we do.
    They are the inferior human beings, not your child. Everyone at some time in their lives will have to deal with some type illness or disability. We all have something to deal with.

    Namaste to all

  • Gravatar
    Comment by Fanoos
    November 19, 2012 @ 7:28 am

    I can’t stop crying …really I can’t …I am 22 weeks pregnant and I am scared about the same thing …and I can’t imagine what you were going through …seriously hats off for your strength and your doll is just gorgeous ….god bless

  • Gravatar
    Comment by Julie
    December 11, 2012 @ 10:04 pm

    I agree that this is very beautifully written! such an amazing story. God bless you and your beautiful family

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    Comment by marijah
    December 28, 2012 @ 10:10 am

    Thank you for sharing. my husband and just had two soft markers show on our 20 week ultra sound and have just taken the materni21 test. I too am already becoming too close with Google but Im uplifted by your beautiful little girl. God Bless.

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