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How Down syndrome changed my perspective on motherhood

Seven months into my pregnancy, my doctor told me “Your amniotic fluid is low, you need to deliver today.” My fiancé’s sister drove me to the hospital and when I got a room in the labor and delivery area, the doctor finally came and I was induced with Pitocin.

I was contracting so hard that the baby’s heart rate lowered and they gave me a choice of an epidural or a Cesarean section. I chose the epidural and after a few hours I had dilated to 10 centimeters. The delivery went relatively smoothly and at 2:16 p.m. our daughter Summer was born. My doctor came over to my bed, holding the baby, and told my fiancé and me, “There’s something we need to talk about.”

I looked down at my little girl. Her eyes were slightly slanted, the bridge of her nose was flat, her ears were so small and not aligned with her eyes, and her cheeks were so chunky. With tears running down my cheeks, I said, “I know. She has Down syndrome.”

This wasn’t a total surprise. An early ultrasound screening had revealed the potential for our daughter to be born with this disability, caused by the presence of an extra chromosome. These tests measure the quantities of normal substances in the mother’s blood. The test results for an mom who wasn’t likely to have a Down syndrome baby would have been 1 in 300. My test results were 1 in 96. At the time I didn’t think anything of it. “That’s like a penny out of a dollar,” I told myself.

Summer needed an echocardiogram to make sure she didn’t have any problems with her heart. Babies with Down syndrome often have heart defects and need surgery within the first few days of life. Then she needed blood work.

When I first saw her, all I could think was, “Why did this happen to us? What did I do wrong?” I wasn’t even thinking of what a gift she was to us until the nurses took her away. I waited all day for her to come back to my room. I didn’t understand why she couldn’t be with me.

After the epidural finally wore off, I went to the nursery where she was kept in a ventilator and I looked at her and cried. She had on an oxygen mask that she kept ripping out of her nose. The nurses had to tape it to her face. That night I woke up every three hours to feed her, each time rocking her to sleep, trying to do everything I could to bond with her.

Five days later, test results finally came back and her heart was perfect. It was the biggest relief. It was time to take her home to her room, where her crib, dressers, and changing table were all dolled up for her, where I had drawn and painted Winnie the Pooh characters on every wall.

It’s been a little over a year since Summer was born, and she’s already taught me so much about life. I really want moms to know that even though she is different, Summer is not disabled. Every child is a gift, and I love mine unconditionally.

– Rochelle Hughes 

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