A Mother’s Blessing: Embracing the Journey of Raising a Son with Down Syndrome

“Over 10 years ago, my husband, Ryan, and I decided it was time to start our family

I had this picture-perfect idea of what I thought our life would look like. Two or three healthy, thriving kids. Maybe one of them would want to dance like I did as a child and teen. Maybe one of them would be the MVP of their baseball team like my husband was during his high school days. Life had been pretty easy and pretty darn perfect up until this point, so why wouldn’t it continue this way? That naïve 25-year-old version of myself had no idea of all the challenging, yet wonderful, things God had in store for us. Things I never would have chosen to be a part of our story. Little did I know, God was preparing us for a huge mountain that was about to be placed right in the middle of our comfortable life.

Fast forward to early 2019. Ryan and I were in our mid-30s. We had three beautiful and perfectly unique children… none of which who wanted to dance or play baseball, by the way. By February of that year, we had found out our fourth child was on the way! All of my early prenatal appointments checked out great! The baby’s heartbeat was where it should be, the baby size was also right on track, and I was starting to feel nausea and exhaustion set in. All signs were pointing towards a typical pregnancy like I had with my other children. I was convinced very early on I knew the gender of the baby just by the way I felt compared to my other three pregnancies. We had one boy and two girls already—and this pregnancy was nothing like my girl pregnancies! I knew in my heart this little life had to be a boy, so when our OBGYN asked if we wanted genetic testing, I said, ‘Absolutely, yes!’

You see, genetic testing had come a long way, even from my last pregnancy, which was only 2 short years prior. Not only could they screen for a multitude of genetic anomalies (which, to be honest, was not in the forefront of my mind) but they could also detect the baby’s gender as early as 10 weeks through a simple blood test. That was my driving force for having the testing done. I had to know if this baby was, indeed, a boy!

The possibility of the rest of the testing to come back as anything other than normal wasn’t on my radar. We already had three typical, straightforward pregnancies, so why would I expect anything else this time around? I will never forget the day I got the phone call. It was April 16, 2019. I had spent the morning with some of my friends and their kids and, of course, missed the call from the nurse practitioner. I can remember the excitement I felt when I saw the voicemail realizing my test results were most likely in. I immediately called back. I remember the woman on the other end saying ‘Mrs. Britt, Leeann is going to have to call you back with your results.’ My heart dropped a little bit, thinking it was odd they didn’t just relay my normal results. Why did Leeann have to deliver the results? I quickly brushed it off and patiently waited by the phone all afternoon. After what felt like an eternity (it was probably only an hour), Leeann returned my call.

I was standing in my kitchen looking out the window to our backyard. My two oldest kids were in school and our 1-year-old was down for her afternoon nap. I’m grateful I was alone when I heard the words, ‘Ashley, your test results came back showing there is a high chance of your baby having Down syndrome. Taking your age into account, there is about a 91 to 92% chance this test result is accurate.’ My stomach dropped and tears filled my eyes. I was so thankful for Leeann that day. She delivered the news in a way that was so kind and gentle, and she was one of the first glimpses of God’s goodness throughout our journey. ‘The next step will be to connect you with Maternal-Fetal Medicine for an ultrasound, and possibly more definitive testing if you choose. I will call them and get back to you with your appointment time. Would you still like to know the gender today?’ I quickly said, ‘Yes, please! It will give us something positive to focus on while we wait!’ Leeann replied, ‘It’s a boy!’ This was another one of those God moments. Despite the news I had just received, I could not wait to tell Ryan and our kids later that evening!

Courtesy of Ashley Britt

The next 10 days were hard, to say the least. My anxiety levels reached a new high. I was experiencing physical symptoms, such as heart palpitations and lightheadedness. I wasn’t able to be fully present with my husband or other children. Thanks to the internet (both a blessing and a curse, am I right?), we learned a DS diagnosis could come with a whole slew of major health issues, like heart defects, GI issues, leukemia, and immune disorders, to name a few. We also learned moms who are carrying a baby with DS have a crazy high chance of miscarriage. All of this research only compounded my anxiety, yet I had no doubt we could handle whatever God was about to give us. Those 10 days of living in the gray area were the hardest days of my life, but thanks to our faith and God’s grace, we made it through.

When we got to Maternal-Fetal Medicine, we first met with a genetic counselor who taught us all things DS, like how it is caused by an extra 21st chromosome. I remember struggling because she was talking to us like it was already a ‘for sure’ thing. Next, we had an ultrasound to look for any markers of DS, and at this point, the only thing we saw was a shortened nasal bone, which is typical for a DS diagnosis. Lastly, they offered us further testing for a more definitive diagnosis if we wanted it. This was a tough decision because further testing did not come without risk to the baby. I hesitate to even put this out there for fear of judgment, but this testing could have potentially resulted in miscarriage. There are many people who are highly against taking this risk. I encourage anyone struggling with this or a similar decision to follow your heart and the Holy Spirit’s nudging. There is no ‘one size fits all’ answer for every family and every circumstance. After much prayer, we decided to go forth with the chorionic villus sampling, which was performed on the spot. My mental health was not good, and the best thing for our entire family was to be able to move forward and with a more definitive diagnosis.

Again, God placed the perfect people in our doctor’s office on that day to walk us through another one of our hardest and scariest moments. The genetic counselor promised to watch for my results all weekend and call me if they came in before Monday morning. It was Sunday evening when I got the call. My parents came over for Sunday dinner. As soon as I saw the call, I scooted myself into the bathroom to take the call privately. ‘Mrs. Britt, your testing did come back positive for Down syndrome. There is a very, very small margin for error, but this test is highly accurate.’ After having a quick conversation about what would come next, I hung up and remember feeling a sense of peace. Yes, I was scared, but I was also at peace. This was a sense of peace that could only be explained by God’s presence right there with me in that bathroom. God was telling me He would be with us every step of the way.

The next months of my pregnancy were filled with lots of appointments and ultrasounds. We learned so much about DS (the good and the scary) and met so many wonderful, supportive people. We thanked God every day our little guy was showing no signs of any health concerns, although we knew something could pop up at any moment. We were feeling very blessed! On October 5, 2019, it was 8:30 p.m. and we were just getting ready to put our three older kids to bed when my water broke at home. This was a total shock because I was only 36 weeks pregnant. This little guy was coming a whole month early! Labor was intense, but thankfully fairly short! On October 6th, 2019, at 1:47 a.m., Jonah Graham Britt made his arrival, weighing 6 pounds and 9 ounces! He looked healthy and we were feeling so incredibly grateful. He was absolute perfection, even with an extra 21st chromosome!

The next 24 hours were spent welcoming visitors. Our kids were so excited to meet their new baby brother and spent the whole Sunday at the hospital holding and snuggling him. He was the most precious newborn baby I had ever seen! His sweet, little almond eyes stole our hearts right away. He had all of us wrapped around his itty-bitty finger from the very start. The first day in the hospital was magical! We were so thankful for this time of normalcy and bonding before our world turned upside down again. It came as a huge surprise when our nurse took Jonah for a heart ultrasound (routine for babies with DS) and he never made it back to our room. ‘Jonah has two small holes in his heart, which should close on their own over the next few days,’ the physician’s assistant explained. ‘He’s struggling to keep his oxygen levels where they need to be on his own. We are going to keep him in the nursery on oxygen for now.’

Jonah spent a few days in the nursery of our local hospital before being transferred to a NICU nearby. He spent 3 weeks in the NICU because his lungs needed a little extra time to develop. Babies with DS have low muscle tone, so between this and arriving early, Jonah needed time in the NICU to grow stronger to breathe on his own. We brought Jonah home on October 25, 2019, and it felt so good to have all of us home under one roof after a very stressful 3 weeks! We spent the next few months living life as normal with a few doctor appointments sprinkled in here and there. Routine healthcare for babies and kids with DS is a little more extensive compared to their chromo-typical peers. Jonah would routinely see an audiologist and ophthalmologist, as hearing and eyesight issues are common in people with DS. We also began physical therapy to help him develop his gross motor skills and had him evaluated in other areas like speech and occupational therapy.

Fast forward to February of 2020. Jonah was 3 months old and had just developed a little cough. Of course, I was on high alert because I knew babies with DS can really struggle with respiratory illnesses. I was watching his breathing like a hawk. After a few days fighting the cough at home, I decided it was time to head into the ER. Jonah ended up being admitted to the hospital, not once but twice, during that month for RSV. Both times he needed supplemental oxygen to get over his illness and was sent home on oxygen therapy. Nothing like a crash course in oxygen therapy to heighten my anxiety, but I got the hang of it and grew more comfortable each day. I think he had a full 8 days of being oxygen-free between hospitalizations. While it was a challenging month, we managed to see little blessings amidst the mess and were able to reconnect with multiple old friends who visited us in the hospital.

Days after being discharged from the hospital the second time, COVID-19 hit the U.S. Boy oh boy, was I thankful to have his hospitalizations in the past because the world as we knew it was being taken over by a scary, new virus. Due to COVID-19, our family has spent most of the last 8-plus months staying isolated to keep Jonah healthy. We have used this time to slow down, enjoy a simpler lifestyle, and reflect.

After an absolutely crazy, scary, and chaotic year, this is what I now know: Down syndrome isn’t scary! DS can come with a whole host of health issues that are very scary but DS, in and of itself, is not something to be afraid of. Down syndrome is something very extra special! Jonah has brought our family so much joy over the last year and has taught us so much about acceptance and understanding. He is the happiest and sweetest little boy, and has a way of bringing a smile to everyone’s face, even on our bad days! A life of Down syndrome is one of worth and value! So many new friends have come into our life. Many of these new friends have DS or love someone with DS, and what I’ve learned is people with DS can live a life full of meaning and can contribute to their family, society, and their community! People with Down syndrome are capable! People with DS can hold jobs, can run their own businesses, can go to college, and can even be gymnasts or complete an Ironman. (Have you seen Chris Nikic in the news? If not, you need to look him up!) Given the right tools and supports, people with DS can do whatever they put their minds to!

Having a child with Down syndrome has not been a hardship. Jonah has enriched our lives in more ways than I could ever convey! We are truly blessed to have him in our family, and I wouldn’t change a thing. He has taught us to love more and judge less, and to not set limits for ourselves and others! Individuals with Down syndrome need people like you and me to advocate for them and shout their worth. We live in a time where DS is more widely accepted than it used to be, but we still have a long way to go. And, last but not least, I have learned God is good, and God is with us even at the bottom, middle, and top of our biggest mountains! He will turn our mess and our hurt into things that are more beautiful and more amazing than we could ever imagine.

I am so thankful God didn’t give me the easy and cozy life I had pictured for our family. Despite many challenges, tears, stressful and scary moments, this life is way better than I could have ever dreamed! I am so grateful God chose me to be the mama of a child with DS. It has forever changed and molded me for the better. I feel honored God gave me a voice to share our story and shout the worth of people with DS. Our world is a better place because of his extra 21st chromosome! Join me in opening your heart to all of the extra love, extra smiles, extra hugs, extra knowledge, extra acceptance, and extra awesomeness that comes with an extra piece of DNA!”

This story was submitted to Love What Matters by Ashley Britt of Lebanon, Pennsylvania. You can follow their journey on 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 like this:

‘Aren’t you going to tell me congratulations?’ She wanted me to cry, but she wasn’t going to break me.’: Mom becomes Down syndrome advocate, ‘This is HIS journey’

‘She’ll never be able to do it.’ Doctors didn’t expect much. The win wasn’t just for me. It was for an entire community.’: Woman with Down syndrome becomes ‘Woman of Worth’

‘You’re purposely starving your unborn child by not eating.’ My husband wasn’t allowed in the room for ultrasounds.’: Mom births baby with Down syndrome after hospital malpractice, ‘He is more loved because, not despite, his diagnosis’

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