A DOUGLAS mum is using social media to show that Down syndrome (DS) is just two words, not a sentence.
Orla Brassel discovered 16 weeks into her pregnancy that there was a good chance her second child would be worn with an extra chromosome and have DS.
After the initial shock, followed by weeks of tears, herself and her husband decided they owed it to their unborn child to be his voice, and when baby Harry was born, Orla honestly felt she had been born too.
Harry is now 10 months old and, and Orla says he’s made their lives better: “I can honestly say, he is the blessing we never knew we wanted. He amazes us every day and reminds us that although he has more, he is not less. He is able.”
Naturally Orla, who works with the Brown Thomas management team, didn’t always feel so positive and said her 12 week scan was the start of a “descent into weeks of worry, stress and anxiousness”. She recalls: “Shortly after I had finished breastfeeding my daughter Sophia, I learned I was pregnant again.
“The first few weeks were fairly standard and more or less how I remembered the previous year with my first pregnancy — no remarkable changes to anything, and I was only one year older, so I figured it would all follow the same path. Not so.
“The first scan was ‘inconclusive’ for all the measurements needed to sign off on the progression of a ‘healthy’ pregnancy. The sonographer simply put it down to the scan being a few days shy of the official 12 week mark due to a bank holiday bringing the appointment forward a few days. That sounded plausible. There was no cause for concern. So I returned a week later for a repeat scan, in the hope of an official departing salutation of ‘Congratulations, you’re pregnant! See you at 20 weeks! Not so.
“Still not satisfied with the measurements visible, even having requested the assistance of her colleague to double check, I was asked to return again the following week. OK, baby just wasn’t co-operating, everything wasn’t visible but we were all sure the next one would definitely be fine….right? I nodded and agreed, while thoughts of ‘This didn’t happen with my first pregnancy — something is different’ raced through the back of my head. And so the third scan did appear ‘fine’ — the sonographer seemed happy, but I still had the thought in the back of my head and needed to know more.
“Why did I need three scans? Why was a second sonographer called on? So I probed and drilled for answers. But the answers I was looking for were not forthcoming.
“My scan looked fine, there were no soft markers for Down syndrome, but I knew. I knew this baby was different.
“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. So the following day we were told that our baby had a greater than 99% chance of being born with an extra chromosome. We went home that day, and I cried. For days. Maybe weeks. I kept thinking ‘why me?’
“But I kept processing it and finally, one day, I had a realisation and thought ‘Well, why not me?’’ I could do this. I had no choice. From then I felt an immediate urge to advocate, protect and be a voice for my son. I felt I owed him that.”
Orla said for herself and her husband there was never a question of not continuing with the pregnancy.
“The discussion around conducting an amniocentesis to confirm the Down syndrome diagnosis was abandoned as soon as we agreed the outcome would not influence our decision to continue with the pregnancy, as it would then pose an unnecessary risk to our baby. Terminating the pregnancy was not an option for us. How could I? I didn’t know enough about Down syndrome — what it would mean for our baby, our family, our future. So, while scary, I was willing to learn all about it.
“The statistics on rates of termination for babies with a prenatal diagnosis of DS in places like the UK and Scandinavia, are incomprehensible to me. While I would never judge anyone for making the decision to choose a different path to me, my hope would be they are making a fully informed decision with the most up to date relevant facts. For me, if I can show even one person the amazing gift that Harry is, it might make them see Down syndrome and what it really means, in a different light.“
Harry was born just after 37 weeks with an immediate DS diagnosis.
“After that, a lot of care was taken at scans to monitor Harry for any signs of congenital heart defect (over half of babies born with Down syndrome are affected by this). We were fortunate to know in advance that this wasn’t an issue for Harry.
“However after he was born he was whisked away to NICU for two weeks with various other health issues (liver complications, blood issues, etc). He stayed in neo for six weeks which was hard. While the lead up to the delivery and the delivery itself was the exact same as my daughter’s birth, the following few days of my hospital stay could not have been more different.
“Compared to a busy room with a crying little infant getting lots of cuddles, feeds and visitors with my first, this time there was an empty cot, in a quiet room. The cot served as a reminder that I had a very sick baby whom I was separated from, whom I couldn’t cuddle, kiss or feed.
“The nights in the room were just me — and my pump. No visitors were allowed to meet Harry, it was a lonely time. I remember asking my husband to bring in a balloon to put in the cot so the nurses would know I had actually given birth. But that stay in NICU really made me realise how lucky I was. Every night I was thankful that I was well, that I was producing sufficient milk to feed my baby. I knew Harry was in the best place and was so grateful that I had a wonderful husband taking such great care of our daughter at home. NICU is an eye opener.”
Orla said she encountered lots of various reactions after Harry’s birth.
“Congratulations were hurriedly mumbled as people quickly went about their business — the discomfort in engaging in conversation visible from a mile away. I had way too many sympathetic head tilts and I definitely heard ‘I’m sorry’ more times than I would like. To me, that response is probably the worst thing you can say to someone who tells you their child will be differently abled. Because saying “I’m sorry” implies something bad has happened — and what makes you think that? Nothing could be further from the truth.
“I understand some people get a bit uncomfortable talking about something they know little about —and that’s OK.
“My favourite response was from a friend who, on learning of Harry’s diagnosis, simply said ‘Wow. OK, I don’t know what to say to you’. “And I thought — what a perfectly honest answer. So to anyone who is unsure how to react when you meet us, be honest please, but don’t be sorry.”