‘There’s a 90% chance your baby will be born with Down Syndrome.’: Couple prepares for rare Down syndrome Diagnosis, ‘a diagnosis didn’t change our love for this little life inside of me’

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“We were on cloud nine. It was May 2017 and we were heading into a long weekend with friends and family, and I had just delivered the news to my husband, Matt, that I was pregnant. I had no idea that just a couple of days later, we would experience a loss and pain we were never prepared for.

It began when I started having a lot of pain and cramping, so I did what every sane person would do: I consulted Dr. Google. I reassured myself. Cramping was normal in early pregnancy, everything would be okay. Once I started spotting, I knew in my heart I had lost the baby. I became a part of the statistic. I was one in four. I miscarried and my whole world crumbled. The next few months were a blur and still are. I was broken and felt defeated. I blamed myself for our loss, even though, deep down, I knew there was nothing I could’ve done to change the outcome. Through all of the pain and loneliness, I quickly realized that I should have been much more aware. Why is something so common such a taboo? Why didn’t I know there would be so many tests and ultrasounds to follow? That’s when I decided that I needed to speak up. I needed to be open and honest about what I was going through in an effort to work through the loss. I wanted other people experiencing the same heartache to know they weren’t alone, and social media was the loudest microphone at my disposal. I didn’t know then what a big part social media would play in our journey into parenthood.

Matt and I struggled through the next few months, but our support for each other never faltered. He has always been my port in the storm, my rock, and the only person who can bring me back from the darkness. Our loss made us stronger. We had been through a dark time together and made it out on the other side a much tighter unit. I could not have asked for a more supportive husband and better partner through it all. The following November, we were pregnant again. Everyone was elated. It felt right. I was so diligent about eating the right things, taking the right vitamins and making sure to pay attention to my body and the process it was going through.

Photo Credit: Emily Rae Photography

A few weeks after being sent for IPS testing, I received the call that would ultimately change the course of our lives forever.

‘Your scans showed a high probability that your baby will have Down Syndrome. We have scheduled you an appointment at the hospital.’ I froze and it felt like minutes passed by with my phone held to my ear, complete silence on the other end. Once I snapped back to reality I called Matt and told him what the doctor said. He came home from work to be with me so that we could try and digest this information together. Our little one could be born with special needs.

The thoughts came pouring in: Is that something we could handle? Was I personally capable of being a stay at home mama to a differently-abled child? We were shocked and we were sad but we knew a diagnosis didn’t change our love for this little life inside of me.

At fifteen weeks pregnant, I opened my phone to an email from our genetics counselor, Jackie. She had the results from our NIPT testing and wanted to know if I was available for a phone call. Again, I froze. I knew that in a few short minutes, I would be given a percentage, a number determining the likelihood that our baby would be born with Down Syndrome. Jackie would also confirm the sex of the baby. I dialed her number.

‘Well, Melissa, which results would you like first?’ Jackie asked. ‘I would like the genetics results first, please,’ I replied.

‘There is a 90% chance your baby will be born with Down Syndrome.’

‘Well, okay! That’s the result we expected.’

‘And you’re having a girl!’

‘Wait, what? A girl? Are you sure?’

The phone call ended with a huge smile on my face. I didn’t know until that moment how much I wanted a daughter. Matt was just as shocked about the gender as I was, but I knew how excited he was to be having a daughter.

My pregnancy was full of twists and turns that I wasn’t expecting. We were referred to a high-risk OB, and I continued the second half of my pregnancy as though the baby had already been officially diagnosed. Later in my pregnancy, I was diagnosed with gestational diabetes, and hypertension and I was ordered off of work five weeks before my planned end date. I was physically and emotionally drained. I questioned whether or not I was made for motherhood. How can I be a good mother when I hate being pregnant? I thought to myself. The guilt really set in when we were given an end date to our journey and I was ecstatic. I just didn’t want to be pregnant anymore.

At 38-weeks, I was induced. After two days of laboring off and on, I had an emergency c-section. Emma was born at 8 p.m. on August 8th, 2018. Our lives have been pure magic ever since.

Courtesy of Melissa McLean

We shared the news of her diagnosis online with our friends and family as soon as it was confirmed in the hospital. We were met with overwhelming support and love for our girl that has continued to grow every day of her life. Emma was diagnosed with Mosaic Down syndrome at nine weeks of age when her karyotype results came in. Our magical girl was even rarer than we ever expected.

Photo Credit: Emily Rae Photography

I have spent the past sixteen months shouting Emma’s worth on social media and coming into my own as a mother. I spend every day sharing Emma’s life with the world in an effort to show and inspire acceptance. I share the good, the bad, and the ugly sides of special needs parenthood, mama life, and wife life.

Through the ebb and flow of our journey these past few years, I learned that I have a purpose. I am strong, I am resilient, and I was put in this world to make it a better place for our child. I am so blessed to have the most supportive and loving husband in the world. Matt is an incredible father. He has faced every high and low in our journey with an optimistic mindset. He is the reason I feel confident as a mother, a wife, and an advocate. His strength is what motivates me to continue with our fight for Emma to be included in the world around her.

While I don’t know where our journey will take us next, I now know that every step along the way serves a purpose, too. While hardship is inevitable, the joy I get from raising my beautiful daughter surpasses any challenge that could come our way. Emma opened my heart to a love that I didn’t know was possible. By sharing our story, I’ve met incredible families, opened up perspective-shifting conversation, and I know that’s creating a ripple effect. The world is becoming more inclusive, more accepting, and more loving.

And even though there’s still so much work to be done and more to advocate for, it’s the three of us together, and I wouldn’t have it any other way.”

Courtesy of Melissa McLean

This story was submitted to Love What Matters by Melissa McLean of London, Ontario Canada. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear about your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more powerful stories like this:

‘My baby was at ‘high risk’ of having Down syndrome. I mourned the baby I thought I was going to have, what she would look like, if I would be able to look after her.’: Couple ‘mentally prepares’ after Down syndrome diagnosis’

‘Yes, Meg. The baby is healthy, stop worrying.’ Coward. She knew. I saw it and felt sick. I didn’t want to hold her.’: Mom unknowingly births baby with Down syndrome, ‘I want to shout her worth to the world!’

‘We found a hole.’ His heart was beating. What did we miss?! I wasn’t a special needs mom. I didn’t have the qualifications for that.’: After 7 kids, 3 miscarriages, mom births baby with Down syndrome, ‘he is our extra special little man’

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