“‘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. The timing was unexpected and we allowed ourselves to get caught up in all the stressful parts of another child and not the happy ones. When we went to our 12-week scan and learned something might be wrong with the baby, all of that came to a screeching halt. You would think the potential of a special needs child would make things even more stressful, but it truly made us realize how much we wanted this baby, and how much we wanted her to be okay.
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.
Several weeks later, I walked into my 16-week scan, naively thinking all that ‘bad news’ was behind us. I quickly knew I underestimated things when I walked into the waiting room at the high-risk office. The last time I had been there, we were walking out knowing something was wrong with the baby and suddenly, all those feelings rushed back. Luckily, they called me in without a lot of waiting and we got started. There was my girl – sitting cross-legged and moving just enough to make the scan tough but make me chuckle. The tech was great but I immediately knew something was up when she didn’t talk much about the heart. On the other areas, she was so descriptive. The time in between the scan and when the doctor came in felt like a hundred years. When he did, he got right to the point.
I learned our baby has a hole in her AV canal – the kind of hole that doesn’t close and will require surgery. A small part of me wasn’t surprised since babies with Down syndrome have a high risk of having a heart defect. Luckily everything else on the baby looked great and they referred me to a pediatric cardiologist to get more information. ‘Do you have any questions?’ Only a thousand. But I knew my questions would be best answered by the cardiologist so I chose to wait.
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.
If I could have one wish for Rhea, it would be above all she is respected. She may sound different than most people and she may need more patience from others, but she is worthy of love and respect as much as everyone else. A diagnosis does not indicate a disability, so my hope is people can look beyond the label of Down syndrome and see Rhea for whoever she may be. People with Down syndrome can be athletes, entrepreneurs, philanthropists, public speakers, career professionals, or anything they want to be! It shouldn’t be surprising they are any of these things because when we peel back the labels and remove the limitations, people with Down syndrome are just like you and me – maybe even a little more extraordinary! We want to raise Rhea to work towards her dreams, and we will be here supporting her every step of the way.
Having had to defend her life so early on has lit a fire in me to protect her and those like her. But regardless of what the outside world may do, I know Rhea will always know, in our family, she is loved. Her sisters have fallen in love with her before realizing any differences about her. Rhea has brought more into our lives than she could ever possibly take. Getting her diagnosis was a reality check for my husband and me – reminding us families are not built on achievements and material things, but they are built on love. She’s shown us a different way of looking at things and introduced us to a community of people we may not have had the fortune of knowing. I’m grateful my older girls will grow up with a different level of understanding of the differences from person to person. No matter where our journey may take us, Rhea is worth every moment of it.
As I think back to 18 months ago when I got that phone call, I wish I knew the news being delivered was not scary or ‘bad.’ I wish I could have told myself all the good that was to lie ahead. All the lessons to be learned and the joy that Rhea would bring. Above all, I wish I knew then loving her would be the easiest thing I’ve ever done.”
This story was submitted to Love What Matters by Taryn Lagonigro of Caldwell, NJ. You can follow their journey on Facebook and Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more stories about Down Syndrome here:
‘The nurse handed my daughter back. I instantly noticed her teeny tiny ears. ‘Do you think she has IT?’ I looked at my husband in fear.’: Mom of 3 births baby with down syndrome, ‘She is the most amazing human being I’ve ever met’
‘Is he ok?’ I was afraid to say the words. I never told a soul about my feelings, not even my husband.’: Mom births son with Down syndrome, ‘I am so thankful for his perfect 47 chromosomes’
‘My principal said, ‘I’m adding a boy to your class. He’s from foster care and has Down syndrome.’ I felt this tug on my heart. ‘I want to take him home.’: Single mom, kindergarten teacher adopts down syndrome student
‘She’s in heart failure.’ I’d most likely never get to meet her. We could deliver our stillborn baby.’: Woman gives birth to high risk Down syndrome baby, ‘She defies all odds’
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