When You Find Out Your Baby Has Down Syndrome
posted by McKenna on September 30th, 2007I wish I could tell you in a five step article what happens when you find out your baby has
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, 
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.
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!!
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October 1st, 2007 at 1:35 am
beautifully written!!!
October 1st, 2007 at 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.
October 1st, 2007 at 8:53 pm
Your story is one of hope and it is very inspiring. Thanks for sharing.
October 2nd, 2007 at 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.
October 5th, 2007 at 6:29 pm
How inspiring McKenna! What a beautiful way to assure pregnant women that there are blessings in all things. Thank you!
October 7th, 2007 at 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.
October 10th, 2007 at 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.
October 17th, 2007 at 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….
July 18th, 2008 at 6:04 pm
Thank you… from me and my baby that I love more than ever!!!
17wks preg
July 20th, 2008 at 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: www.downsyn.com/phpbb2/index.php ~mckenna
August 31st, 2008 at 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!!
September 6th, 2008 at 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!
September 11th, 2008 at 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.
September 16th, 2008 at 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
September 21st, 2008 at 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.