Emma Jo, full of personality, teaching everyone involved in her life lots of new & exciting experiences since day one.
When I was pregnant with her I had the quad test done, which is where they test for genetic disorders & chromosomal abnormalities. It came back she had a 1 in 92% chance she could have Down Syndrome. I was terrified at this point. My doctor called my husband and me in to discuss further options, and what all this meant. I was put on high risk & had ultrasounds every week. Emma Jo showed no signs of DS, what they call soft markers. My doctor wasn’t worried about her having DS, and I was told I had nothing to worry about. But, it was always in the back of my mind, and it seemed like everywhere we went, I saw a child or adult with that extra chromosome.
It was finally time for her arrival, and I was so excited to meet her. But, I didn’t get to until at least 2 hours after she was born. My husband went with our baby to the nursery & took pictures, called the family back home in Michigan. When my doctor rushed back into the room. She told me baby was showing signs of Down Syndrome. And this point all I had seen of Emma was a picture. And I thought her eyes looked different. Then the pediatrician came in to talk to us, but my husband was still calling family. My doctor told him to wait, but he didn’t listen and felt like he looked down on us. He went ahead and told me he’s pretty positive she has DS but has to send her blood work out to be completely positive. Only 2 nights in the hospital, frantically googling Down Syndrome feeling lost, and what do to now.
Two weeks later, still no blood test results. I called the peds office to see what was going on. Come to find out they had sent her labs out to North Carolina, still not sure why that far, but… the pediatrician called the lab to see what was taking so long. He called us back, ” well, as I suspected, trisomy 21. Down Syndrome. Good luck, have a good weekend!” THAT WAS ALL WE GOT!!
So, there we sat, pretty much in the dark. Brand new parents of a child that has a very scary diagnosis. So, then I bursted out of my shy shell & searched more locally about Down Syndrome. Found out about Vanderbilt’s Down Syndrome Clinic and I talked with a employee there, and she gave me the info to our local Down Syndrome Association of Middle Tennessee. So, I called them, talked to our director and all of a sudden, I saw light at the end of this tunnel I was so scared to be in.
We have been celebrating her extra chromosome from that time on. We feel so incredibly lucky & proud to be her parents. I prayed for a healthy baby, and I sure got one. Emma Jo is very lucky not to have any of the typical health risks of her other friends with an extra chromosome. Which I am so thankful for because our story could have been totally different. And with all the scary moments I’ve had, I wouldn’t change it for anything. It has tought all of us so much. I sometimes wish I could go back and tell myself to relax, enjoy your pregnancy, enjoy your baby, enjoy all the extras! Just breath and take one day at a time! It’s so worth it!