‘I got the test results. I felt I let my husband down. Like I somehow failed to give him the ‘perfect’ baby. The silence was deafening. I kept thinking, ‘Why me?’ Then I thought, ‘Wait, why NOT me?’

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“Having grown up with my sister quite close in age to me, I always knew I wanted more than one baby. So, when I was learned of my second pregnancy after having just stopped breastfeeding my daughter, my husband and I were thrilled. Surprised… but thrilled. A little sibling for our daughter Sophia was on the way and the excitement of adding to our little family started building all over again.

The first few weeks were fairly standard and more or less how I remembered the previous year with my first pregnancy. There were no remarkable changes to my circumstances. Given that I was only 1 year older, I figured we would go through the same motions and, in a couple of months, welcome our perfect little baby into the world and start life as a happy family of 4.

My 12-week scan proved the start of my descent into weeks of worry, stress, and anxiety. The first scan was ‘inconclusive’. The sonographer put it down to the scan simply being scheduled a few days shy of the official 12-week mark due to holiday scheduling shifts. There was no cause for concern. So, as requested, I returned a week later for a repeat scan, in the hope of an official departing salutation of ‘Congratulations, you’re pregnant! We’ll see you back here in 8 weeks!’ However, the second scan again proved inconclusive. The sonographer, unsatisfied with the pictures, requested the assistance of her colleague for a second opinion. And so again, as had previously been requested, I was scheduled to return again the following week for a third scan.

I went home and continued imagining our family of 4. Excitedly looking at photos around our home, I couldn’t help but look forward to the following year which would see lots of new photos on our walls of our perfect new family of 4. But at times my thoughts would drift. While I had no obvious cause for immediate concern, thoughts crossed my mind as to why I had to return for a third scan in 5 weeks. My first pregnancy was ‘textbook’, one 12-week scan, a 20-week scan and the regular prenatal appointments in between. This pregnancy was already taking a different path, and I wasn’t sure where it was going.

The third scan proved more successful with the sonographer happy with what she saw. But by then I had questions I needed answered. Why did I need 3 scans? Why was a second sonographer called on for the second scan? Why were mumblings and furtive glances exchanged – what did they see? What were they not saying?

I probed and drilled for answers. But the answers I was looking for were not forthcoming. What I wanted to hear was ‘Congratulations, you 100% have a healthy baby and everything looks perfect!’ Of course they can never tell you that but I wanted as close to that as possible. All I could get was, ‘This is merely a scan. While all looks fine today, maybe for peace of mind a blood test would be your best bet – just to put your mind at ease.’ I remember phoning my husband on the way out of that appointment to tell him I would be opting for the screening test, and even then I thought something was different. Whatever had just happened, the fact that the conversation had somehow led to screening being discussed raised a red flag for me.

I opted for the Harmony test and at 16 weeks pregnant, I got the call to come in to the hospital the following day as something had shown up on my test results. Sure enough, on that day we were informed that the test results had shown that our new baby had a greater than 99% chance of being born with an extra chromosome. The consultant who delivered the news to us could not have been nicer. Her kind words and manner set the tone for our appointment and we knew we were in good hands.

We went home that day, a deafening sad silence enveloping the car. I cried. For days. Maybe weeks. I kept thinking, ‘Why me?’ I felt I had let my husband down. Like somehow I had failed to give him a ‘perfect’ baby. My husband turned out to be my rock those first few weeks post diagnosis. We took comfort in each other. I thought again of the photos. I had never imagined that the newest addition in our family photos on the walls of our home would have Down syndrome. I couldn’t get my head around it

But I kept processing it and finally one day, I woke up and instead of thinking why me, I thought, ‘Wait, why not me?’ I could do this. I had to do this. I had to pull myself together. I had a little girl at home who needed me to be strong for her, and a little boy growing inside me who I needed to be even stronger for. I figured I had 3 choices – give up, give in, or give it everything I’ve got. I went with option 3.

Once I was ready, I told everyone I met about my baby’s genetic anomaly. I found it cathartic. The more I discussed it, the more I was normalizing it for myself. I had so many varying reactions. I had the ‘I’m so sorry’ accompanied with sympathetic head tilts. I had women sob into my arms such was the level of sympathy they had for me and the road I was about to travel on. The inference somehow was negative. By contrast, parents of children with additional needs whom I had never spoken to simply congratulated me and welcomed me to their community with open arms…and a big hug! I found the more I spoke about DS to people, the urge to advocate for my baby grew stronger. I knew I had to be his voice until his own could be heard.

I threw myself into the fight. The fight for inclusion & acceptance for my baby I had yet to meet. As I had time to prepare for my baby’s arrival, I started reading all I could about Down syndrome and what it would mean for my baby and our family. Researching Down syndrome, it was easy to get caught up in medical studies & statistics, outdated reports and archaic information outlining probabilities as opposed to facts. Artistic impressions of what my baby ‘may’ look like with characteristics associated with DS greatly emphasized appeared regularly. Expected delays for milestones to be met by babies with DS cropped up frequently alongside endless lists of health complications babies with DS may have. Certainly the information available weighed heavily on the negative side with a seemingly particular focus on what my baby would be unable to do, as opposed to his endless potential abilities.

So, I took to social media. Here I saw real life families, documenting real life with their babies who happened to be born with an extra chromosome. It was such a happy, joyous place! So many inspiring families showing that DS is simply 2 words, not a sentence. Pictures of families so full of love flooded my Instagram and I wanted to be a part of that positive place.

Harry Brassel was born at almost 38 weeks. He was born quite ill with liver issues and so spent the first few weeks of his life in the neonatal unit of our maternity hospital. Those first few nights in the hospital were lonely. Harry was in intensive care so the cot in my room was empty. Echoes of new baby sounds swarmed around me every night and day as my son fought for his life in the ward below.

Courtesy of Orla Brassel

There were endless hours of pumping alone in my hospital room. Visitors were few as there was no baby to visit. Leaving the hospital 5 days later without my baby was probably one of the worst feelings in my life.

Courtesy of Orla Brassel

But I knew he was in good hands and put my trust in the professionals to get him well enough to eventually come home. And after 42 nights, he came home and our world has been a better place ever since.

Courtesy of Orla Brassel
Courtesy of Orla Brassel

I really believe the day Harry was born, so too was I. After a few months settling into my new role as a special needs mom, I knew I wanted to use social media to share our experience with Down syndrome. I now share our journey in the hope of helping others. Those in need of a supportive hand, who are scared and looking for hope. I want to offer clear eyes to new parents who, when dealing with a new diagnosis, cannot see past the medical reports and probabilities. I have been there, and it can be hard. The fear of the future is real. I remember conversations with my husband in the early days where I asked, ‘Do you think we will ever laugh or be happy again?’ The anxiety and overwhelming sadness can simply be due to the unknown. So I’m sharing what we know – that life is better with Harry and we absolutely would not change a single thing about him.

Definitely one of the most challenging things I have come across are the stereotypes associated with DS. The language people use, coupled with the outdated archaic information available, is adding to misconception about people with Down syndrome.

I always say that the biggest challenge Harry will face in life is people’s attitude towards him. As much as I would love to control that and protect him, I can’t. I am trusting my friends and family to raise their kids to be kind, to teach their kids about inclusion, sharing Harry’s story to spread awareness, defy stereotypes, and shine a light on Harrys abilities. Because if kids know better, they will do better. The language people use, sometimes unintentionally, does little to help break down barriers. I tell my friends the importance of using first-person language in the hope that they in turn teach their kids that Harry HAS Down syndrome, he IS not Down syndrome. To describe him as such lessens his worth as an individual. Yes, of course it’s a feature of him. But it doesn’t define him. It’s just an extra chromosome.

Courtesy of Orla Brassel

What do I wish I had known before Harry was born? I wish I’d known the positive impact on our family this new baby with Down syndrome would have. He has truly brought something indescribable and has unified our family. I wish I had known that the biggest change this baby was going to bring was in me. He hasn’t changed who I am, he has revealed who I am. I see life differently now and have a different perspective on everything. I don’t believe that God gives special babies to special families. We weren’t special. We were just normal, imperfect people whose lives changed direction when Harry arrived. Harry is the one who MADE us special and we are forever grateful.

Courtesy of Orla Brassel
Courtesy of Orla Brassel

My advice to anyone on this path behind us? Find your tribe. Reach out to people you can in the same boat. They will be your lifeline. When the fog is down, someone will see through clear eyes. When the sound of medical jargon is deafening, someone else can listen. When you feel like you may fall, reach out for a hand. Parts of the journey will be overwhelming but those that have traveled before you can shine a light on the way. There is an amazing worldwide community, all connected by these amazing babies and family members ready to welcome you. Of course a diagnosis of DS is scary, but it’s just that – a diagnosis.

Harry has not only revealed who I am but I see a whole new side to his sister too. She is so caring and protective of her little brother and is showing a remarkable interest in communicating with him. She is already a proficient sign language user and loves learning new signs. Their interactions are heartwarming and there is nothing better than watching their playtime together before bedtime each night. The giggles can be heard for miles, I’m sure of it. Each day, I’m reminded that they are more alike than different.

Courtesy of Orla Brassel
Courtesy of Orla Brassel
Courtesy of Orla Brassel

As for the future, my worries and concerns for both are the same. I know Harry won’t be able to do everything his sister will do. I’m well aware it may take him longer to do things. But his ability should not be discounted. His disability should not be mistaken for inability. I will shout his worth every day and advocate for his inclusion in life. I hope to challenge perceptions and show every day that life is better with Harry and there is truly nothing down about it.”

Courtesy of Orla Brassel

This story was submitted to Love What Matters by Orla Brassel. You can follow her journey on Instagram here. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

Read more from special needs moms:

‘My doctor held my hand and started, ‘Tami…’ In that moment, I knew. I couldn’t breathe because I knew. Or at least I thought I did. My heart exploded with relief!’

‘He looked me straight in the eye. ‘I’m sure you’re aware this is a FINAL decision. Once I sign off, you cannot change your mind.’ They’re a sibling group of 3, and 2 of them had special needs.’

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