A Peek Into Life With a Down Syndrome Child: The Ups Outweigh The Downs

I just LOVE Tatum! I met her though this viral post. She is such an inspiration to me and everyone around her!  The following article that she wrote is such a great peek into life with a down syndrome child. Please SHARE to get the word out about the ups of down syndrome. 🙂


by Tatum Spruill | Staff Writer for The Snap Mom

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Folding never-ending laundry, assessing my living room after the tornadoes that are my children destroyed it, and ignoring the massive pile of dishes in my sink: I am a stay-at-home mom, and on this particular day I was doing my normal routine.  My phone rang, and it was my OB/GYN’s office calling to tell me that my routine blood work with baby #3 came back not so routine. She prefaced the news with, “don’t worry, these false positives happen all the time.” I immediately rolled my eyes wishing whoever makes these tests would just get their act together. My baby was showing a ‘false positive’ for Down Syndrome. My husband and I are both 24 years old. This was clearly a mistake. 

Two weeks later, I was sitting in the office of a high risk doctor. I sat down with a geneticist before my sonogram to go over family history. There is no family history. Just by looking at my blood work, she said the baby was a 50/50 chance of having it. Next came the sonogram. The doctor confirmed the diagnosis by seeing multiple ‘markers’. That little baby on the screen, in my belly, has Down Syndrome? I got very emotional, not because I was sad, but because I was shocked. I was so sure this was going to be nothing but faulty testing. For crying out loud, I didn’t even have my husband come with me. After the initial shock wore off, my husband and I were so excited. We knew we were meant to do this.

At 37 weeks and 2 days pregnant, I was flown two hours away and gave birth via C-section. Jansen Bo Spruill weighed in at 5 pounds 6 ounces. His NICU team was waiting and took him immediately. Two hours passed before I laid eyes on my son or heard him cry for the very first time.  He looked so tiny and fragile in that incubator. He was born with two holes in his heart, and he couldn’t breathe on his own. We spent 5.5 weeks in that hospital before being moved across the street to a children’s hospital. He underwent open heart surgery, and a month later had a second surgery to place a feeding tube in his stomach. A diagnosis of Down Syndrome carries a 50% chance of having a heart defect. They often have trouble eating on their own because of very low muscle tone, and therefore, they get tired easily.

After almost three months in the hospital, we took our little guy home for the very first time. Since then life has been hectic, but wonderful. The little things, like holding his head up on his own for one minute, are big things for us and don’t go unnoticed. He fills my heart with so much joy and has made me a better person. Over five hundred people follow his journey so that they can watch him grow and see his accomplishments. He loves smiling and has mastered rolling over. We are working on supported sitting, and he is doing great. All of his doctors and therapists are amazing. Thanks to them, he is thriving. I never in my dreams would have imagined that this would be my life right now, but I’m so blessed that it is. This beats any fantasy I could have made up in my head and I wouldn’t change it for the world.

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Sweet Baby Jansen

 

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