I am the mama of a miracle.
I was at the beginning of my second trimester with our second child when we received a phone call with news that no parent ever wants to hear. The NIPT blood test showed that something was potentially wrong, and we needed to come in for further testing. This testing revealed that our baby had a rare genetic disorder called Monosomy X, better known as Turner syndrome. Almost 99% of babies diagnosed with TS do not survive to birth. Our sweet baby girl, who we had wanted for so many years, had a 1% chance of ever being in our arms.
I took this news badly of course. But God …
I met my MOPS tribe only 10 days after her diagnosis. I was still in the deep throes of mourning, but a casual invitation to VBS at a friend’s church changed everything. Their MOPS group met while the kids were in VBS. One evening there was a discussion about fear, and everything came pouring out of me, along with buckets of tears. I didn’t know any of these ladies, yet I shared with them what we hadn’t even told our families yet. As a result, I met other moms who had been through similar situations. For the first time, I didn’t feel alone. God’s divine intervention had put me exactly where I needed to be, when I needed to be there.
I registered for our MOPS group and got to know more of the women. Each time one of them heard what was happening, I instantly had their love and support. It was like so many angel wings being wrapped around us. The prayers going up for our sweet girl multiplied daily. My pregnancy continued, and it began to look like our baby girl might be one of the few to make it. As her due date grew closer, there was concern she would need heart surgery soon after birth. They set my induction date and we waited and prayed.
Our Cecilia was born at full term. She did not cry upon her arrival into the world and was whisked away to the NICU where she stayed for eight days. She had multiple tests and several echocardiograms, but she wouldn’t need heart surgery. My MOPS tribe showed up for us with meals, visits, messages and so much love and support. We were finally able to hold our tiny miracle in our arms.
Cecilia is now 10 months old and has a team of specialists who work with each facet of her TS. Each girl or woman with TS has different traits, and no two cases are identical. We were prepared for many things, but the next part of her story blindsided us. When she was 4 months old, her doctor could not find the retina flash in her right eye upon examination. Many tests and two eye surgeries later, we found out that she also has a very rare congenital eye disease called Coats disease. She is currently blind in her right eye, and we were initially told that she always would be. She’ll be having her fifth eye surgery in March, and there is the possibility of her sight being restored. Once again, our little warrior is a miracle girl.
Throughout all of this, my MOPS sisters have been there for us. We live three states away from our entire family, and before I found my tribe, I only had a couple close friends nearby. I don’t know how I would have made it through all of this without the love and support of these amazing women who we now call family. Our sweet girl has so many new aunts and grandmothers, all of who are amazing advocates for her and the Turner Syndrome community. Also, the awareness our MOPS group has been able to raise for TS is incredible!
It is important that I share my story, and MOPS is a very important chapter in it. I often think of the mamas out there who are in a similar position as me, but haven’t found the love and support from amazing women. Friends, God put amazing women in my life, and you could be the very friend a struggling mom needs. Reach out and invite her to MOPS. You’re invitation just may have a huge impact.
Alison Owen lives in North Carolina with her husband, son, and daughter. She is a former researcher turned homeschooler who is passionate about raising awareness of Turner Syndrome and Coats’ Disease.