The tests show a third copy of the 21st chromosome across all cells, consistent with Trisomy 21. Have you and your husband discussed what you would do?’
I had three babies before this, but this was the first time someone had asked me if I wanted one of them. ‘I will call you back,’ I said, in a complete fog.
The truth is we hadn’t discussed anything since electing to do a CVS test 5 days prior. We looked up statistics that gave us hope and helped us pass the time, but we never actually discussed what it would mean if the results showed anything.
This pregnancy had already been stressful to this point. Learning there might be something wrong with our baby made us focus on how much we loved and wanted her.
After delivering the news of the Down syndrome diagnosis to my husband, our discussion was about 5 seconds long. I’m not sure what it was, but we just knew it wasn’t for us to decide our daughter was worthy of life. She was worthy the same way our three older daughters were, Down syndrome or not.
So, we continued along. That’s not to say I didn’t worry. I worried about what life would be like for her and I worried about how our family might change. I worried about potential health issues and the struggles she might face. But I knew, despite all of that, she was worthy.
At my 16-week scan, we learned our baby girl has a heart defect, but everything else looked good.
To say we were nervous about the cardiology appointment would have been an understatement, but it was the first appointment I went to during this process I didn’t leave in a mess of tears. Yes, she had an AV canal defect and yes, she would require open-heart surgery when she is an infant, but our new cardiologist made us feel as good as possible.
He told us about other patients with Down syndrome he has, including one he met 28 years ago as an infant when no one else wanted to take on her case. He spoke to us directly but not negatively. He told us he was glad we were giving our daughter a chance because a lot of people stop way before even going to see him. He was medical but human.
The pregnancy already deemed ‘high risk,’ became even more stressful with the heart diagnosis. I spent more time at the doctor during my second and third trimesters than my other three pregnancies combined, all the while building Armor around me while doctors spoke about my daughter in a way I hadn’t heard the other times either. A prenatal diagnosis is both a blessing and a curse. I am grateful for the time I had to prepare and learn about Down syndrome, but the stress some days felt like more than one person could bear.
In late March of 2020, Rhea was born. I call her our sunshine because, after many months of stress, the sun came out that day. I realized all those worries and all that stress didn’t matter anymore. Loving her was the easiest thing I have ever done. She was ours and we were hers.
At just over 2 months old, Rhea had open heart surgery, and her heart was successfully repaired. This was a moment we had been preparing for since that 16-week appointment. For all that time, I kept feeling like I couldn’t wait to put it behind us. For me, it was something hanging over us until we could move on with the rest of her life. What I realized after the surgery was over is it would never be something that we put behind us. Being a heart warrior is something Rhea will always be, and she will always be my hero.
Throughout her short life so far, I’ve watched Rhea work so hard. I know this is something that may never change. I know things won’t come as easily to her as my typical children. I know, as her mom, I will have more appointments and more therapies, and more oversight of her than my other girls. I know things will be hard sometimes, but I know loving her will be easy.
At the end of the day, there are no safeguards against hard days, scary parenting moments, and unknown territories. I truly believe this little girl was sent to us to bring us more joy than we ever imagined. This journey will be mixed with both tough and beautiful lessons we will grow from. The good times will far outweigh the hard times I know that in my heart, and I hold that through my fears.
I hope Rhea is always respected and loved, and she has the same potential as anyone else our family will support her every step.
