Adriana Ellis has a tug-of-war going on in her heart. She’s a mom raising a daughter, Alexandria, 3, with a fatal disease, Spinal Muscular Atrophy, and is expecting her second, a genetically healthy baby boy in October.
When Alexandria was little and struggled to hold her head up, you say you couldn’t shake the feeling that something was wrong. Why is it so important to trust a mother’s intuition?
As moms, we just know when something is off. You can read all of the books you want and can listen to all of the advice you can get, but ultimately I’ve come to realize is that even if it isn’t 100 percent accurate, our gut often leads us closer to the truth.
What ran through your mind when you received the SMA diagnosis when Alexandria was just 6 months old?
Hearing the diagnosis was like getting a life sentence to watch your child not be able to live the life you want her to live. But I’m an eternal optimist who hopes my daughter can defy the odds. I haven’t fully accepted that SMA is terminal, which keeps me forging ahead, for research, medicine and a cure.
Tell us about your decision to have another child.
Selfishly, we wanted to be able to experience some of the aspects of parenthood that we will never get a chance to. Having another child will also force us to live more, and it will bring some new energy and additional hope into the household. Plus, it will be great stimulation for Alexandria, who will be an awesome big sister.
Since you and your husband are both genetic carriers of SMA, what process did you go through to ensure your son would be genetically healthy?
We went through an IVF cycle with a frozen embryo transfer (after consulting with Dr. Asima Ahmad at Fertility Centers of Illinois). The embryos underwent genetic testing to screen for SMA. Of the two chromosomally healthy embryos we ended up with, they were both marked as SMA carriers. We decided to implant one and hope for the best and keep one viable embryo remaining.
When you found out you were pregnant, what sorts of mixed emotions did you experience?
I was excited and terrified at the same time. I started asking a million questions, wondering whether my son could suddenly develop SMA. It took awhile for me to modify my mindset and realize that it was a blessing that my son was just an SMA carrier, rather than a child affected by the disease.
Adriana Ellis
Spouse: Scott
Kids: Alexandria, 3, expecting baby No. 2 in October
Perfect family day in Chicago: Boating on Lake Michigan and going to a Cubs game
Parenting must-haves: An iPad to keep Alexandria entertained, coffee to kick off the morning
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This article originally appeared in the October 2019 issue of Chicago Parent. Read the rest of the issue.
