My Journey as a Down Syndrome Mom

His name is Jonas and he’s my homie with an extra chromie.

Eventhough the odds of having a child with Trisomy 21 is about 1 in 700, I never in a million years thought I would have this experience. I was already a mother to two little girls when I found out I was pregnant with our son, Jonas and honestly thought I had my hands full then, but little did I know.

My husband and I walked out of our ultrasound fist pumping that we were finally having a littel boy. I looked over at him and said, “I’ve never been so excited to have a penis in me my whole life!” We were both over the moon with excitment but at the same time, there was a little voice in my head telling me somthing wasn’t quite right. I wasn’t sure what that was but our ultrasound technician held back on what she was seeing on the monitor and I received a call from my lovely midwife later that day, asking me to come back for a second ultrasound.

Ok….deep breath! I kept telling myself, “its ok! We’ve had two healthy pregnancies, what could possibly be wrong?” This is the point where I let my mind wander but it didn’t take long to push that aside and press forward.

Two days later, I was laying on the ultrasound table and still not truely understanding why I was there to begin with but there he was! Such a beautiful baby boy who also didn’t understand why they were taking another look. When the ultrasound tech examined my belly, she seemed concerned but she wasn’t allowed to say why. I was just told to call my midwife and set up an appointment with her that day. I pressed hard but all she could tell me were the following:

1. There was extra fluid in his brain.
2. He had a thickened nuchol fold.
3. There was a small malrotation in his right foot.
4. She noticed calcification on his liver.

All I could keep asking was, “What does this mean?” Her reponse, “Call your midwife and she will go over all of this with you.” I can’t say I was panicked in that moment but I was definitely concerned for my baby boy. I called my husband to let him know what was going on and he offered to join me but I was still so shocked and let him know everyting was ok and I would let him know how my meeting with the midwife went.

I should have menitoned that I had taken a quick trip to the grocery store on my way to the office and needed to put them away on my to my midwife. It didn’t take long for that little voice in my head to switch gears and that’s when the panic set in. I called my husband back immediately and asked him to join me because I was genuially scared in that moment.

We arrived to my Midwife’s office and we waited for what felt like hours. The nurse normally meets us in the waiting area to bring us back but not that morning. Instead, our midwife, Deb, brought us back. I looked over at Jeff and said, “that can’t be good.” We took a deep breath together and followed her back to the exam room where she held my hands and broke the news about our son. We were told that the markers on his ultrasound showed that Jonas may have Trisomy 21.

I was in such a state of shock that I left my body for a slight moment and it felt like I was physically there but I had stepped out of my body. All I could do was cry big, fat tears. Sure, this sort of screening isn’t anything abnormal but at the same time, this happens to other people, not us. All I could do in that moment was bury my face (full of tears) in my husband’s chest. All the tears transferred to his light blue polo shirt and never washed out.

Noninvasive Prenatal Testing (NIPT) was the next step. This is a simple blood test that looked at tiny pieces of Jonas’s DNA floating around my bloodstream to check for certain genetic conditions, like Down syndrome by seeing if there’s an extra copy of chromosome 21. Luckily for us, this was the alternative to the amniocentesis, which I wanted to avoid altogehter because in my mind, this wasn’t worth the risk. Thank goodness for advances modern medicine!

The kicker? We had to wait 7 full days to recieve the results of the blood screening. This was the longest week of my life! I was still in absolute shock and couldn’t wrap my mind around what was happeing. I want to be very clear; I wasn’t sad about Jonas’s diagnois, because I was going to love that boy no matter what! My sadness revovlved around the fears surrounding his quality of life. Questions arose in my mind: Would he graduate high school, go to college, get married, life past age 25? Would I bury my son one day? This was an extremely dark time in my life and couldn’t even recognize myself in the mirror for weeks following this heavy news. Every little baby boy I saw when I was out and about brought me to tears. All I kept thinking was, that’s the son I was “supposed” to have. When I say I was in a dark place, I meant it. Looking back, this worry and fear stemed from not truly understanding Down syndrome. I’ll admit, I didn’t do what most people do, which is to get on the internet and reseach. To this day, I’ve never gone on Google and reseached Down syndrome.

The days slowly ticked by and since I couldn’t control what was happeing inside my growing belly, I was able to control my enviornment so I deep cleaned our home that entire week. Every drawer and closet were cleaned and organized by day 7.

The day finally came and it was time for Jeff and I to get the answeres we were so desperate to know. We met with maternal fetal medicine that morning and sat through the longest ultrasound of my life. The room was completely silent as the technician scanned every inch of my son. An hour later, the doctor came in and invited us back to her office. She asked many questions but my eyes kept scanning her notes that had pictures of chromosomes and I just asked her to give it to us straight…”Does our son have Down syndrome?” She replied coldly, “yes.” For the record, this doctor was not “cold”, she was just straight forward.

Moments later, we were greeted by a coordinator who was exactly the person I needed in that moment. I vividly remember the first words out of her mouth were, “CONGRATULATIONS!” She then handed us some paperwork to take home with us. I was still in another state of shock and wasn’t able to look through anything until we got into the car. It was then, my mindshift went from scared to hopeful. There were so many incredible stories of children with Down syndrome growing up to do amazing things! One dude became a drummer, one got married, while another graduated from college. That day I leanred that my son was more alike than different.

At this point we did not have a name for this boy. We had a long list but there wasn’t a name that jumped out to us unitl we drove home. That’s when “My Name is Jonas” by Weezer played. I looked over at Jeff and said, that’s his name! So perfect!

It took many weeks for me to reach the state of acceptance and once I did, I was faced with the realization that I’m only 20 weeks pregnant and we still had a long way to go. There’s no clear way of knowing how babies are as they are growing in the womb. What kind of issues was Jonas going to face once he was born? Will he need open heart surgery? Would he be able to breathe on his own? Hardest question I asked myself was….will he make it? I was so over the moon have him as a son but I couldn’t help but worry if we would even get the chance to meet.

Fast forward 18 weeks to our induction date. This was not the way I wanted to have my baby but it was the best decision in the moment and one decision I don’t regret making. The day was long and full of uncertanty. I went into this induction with the expectation of meeting my son by lunch but that didn’t happen. It would be another 15 hours before we’d lay eyes on each other. As I was pushing, my doctor realized that Jonas was not responding well to the pushing process and that I needed a cesearan section. Seriously? This was not what I had expected but here we were.

Like all women who give birth, I had worked so hard to get him earthside and when I saw his sweet face for the first time, the love I had for him was so overwhelming. In that moment, I needed him and he needed me but the NICU needed him first. Jonas spent the next 16 days fighting hard and we were by his side the enitre time.

Here’s the truth about the NICU: It’s devastating regardless of the situation. As a parent, watching your child struggle is absolutely heartbreaking! Everyday is filled with uncertainty and you never know when you’ll be able to bring your baby home. Regardless if your baby is in the NICU for 2 days, 2 weeks, or 2 months, it’s hard!

Today, Jonas is 9 years old and thriving! He’s in third grade and making straight A’s! He’s also the most popular kid in school, which is not surprising.

Jonas has taught me so much over the past 9 years. He’s so full of life and doesn’t let his extra chromosome keep him from greatness. His smile melts hearts and if I’m being honest, this allows him to get away with what most can’t get away with. This sweet boy is loved by every one who meets him.

Charlotte, North Carolina has such an amazing Down syndrome community, full of parents who have had similar experiences. It’s these parents who continue to change the narritive around Down syndrome. Yes, those with Trisomy 21 many have an extra choromosome but at the end of the day, there’s nothing down about that!