I 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!!
Since Darah’s birth in 2004, my family has participated in our local Buddy Walk. The Buddy Walk was developed by the National Down Syndrome Society to raise awareness and promote inclusion for persons with Down syndrome. It was also developed as a major fund raising event to provide more resources and opportunities for people with Down syndrome and their families. Since Darah’s birth, my family has found another family in our local Down syndrome support group.
