Down syndrome: Two words, not a sentence

October is Down Syndrome Awareness Month. EMMA CONNOLLY talks to mum Orla Brassel, from Douglas, about her ten-month-old son, Harry, and the joy and happiness that he has brought into their lives — and why she wants to share her family’s story with others
Down syndrome: Two words, not a sentence
Orla Brassel, with Harry and Sophia.

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.

A REAL JOY: Harry, who inspired his mum Orla to write about the family’s life, to shine a positive light on Down syndrome.
A REAL JOY: Harry, who inspired his mum Orla to write about the family’s life, to shine a positive light on Down syndrome.

“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.

BY HIS SIDE: Harry with big sister Sophia.
BY HIS SIDE: Harry with big sister Sophia.

“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.”

In the weeks and months that followed, Orla began to immerse herself in a new world, one which was often quite a negative space.

“It was very easy to get caught up in all the medical reports, stats, tables and graphs all outlining delayed timelines for your baby to reach milestones, health complications your baby may have, as well as list after list of what your baby will be unable to do. So I took to Instagram. Here I saw real life families, documenting what life with a baby with Down syndrome really looked like, and it was such a happy place!

“So many inspiring families showing that there really is ‘nothing down about it’, with pictures of families full of love, and I wanted to be a part of that positive place. I really believe the day Harry was born, so too was I.

“After a few months settling into my new role as a mum of a baby who is differently-abled, I knew I wanted to use social media to share our experience with Down syndrome. I 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, stats and graphs because 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 that Down syndrome is only two words, it is not a sentence.”

At just 10 months old, Orla has already identified some gaps in services he’ll need going forward.

HELP IS AT HAND: Harry who uses the services at the Down Syndrome Centre in Forge Hill.
HELP IS AT HAND: Harry who uses the services at the Down Syndrome Centre in Forge Hill.

“We were picked up quite quickly by our Early Intervention Team once Harry was discharged from hospital. We were linked with his physio team in Brothers of Charity a few weeks later and monthly home visits were scheduled. And yes, it’s great he gets monthly visits, however it will culminate in 12 hours physio in his first year which I imagine will be insufficient.

“The early intervention team are amazing and do such great work with Harry but unfortunately, their over-stretched resources currently don’t allow for more than an hour a month.

“Brothers of Charity also offer early communication courses like Little Lamh to aid with speech and language development for babies. Luckily, I live near the wonderful new Down Syndrome Centre in Forge Hill which from time to time offers physio /SLT appointments, and baby massages courses as well as a great place for new parents to meet and chat.

“They also offer SKIP classes which is like a pre-pre-school class, preparing our kids for mainstream Montessori and school by developing their social and independence skills.

“I’m involved also with Down Syndrome Cork who provide information evenings, courses and classes too, which should be great as Harry gets older.

“Occupational Therapy should come into play as Harry gets a bit older, but like SLT, I can see us having a battle on our hands to get adequate services.

“I have already found waiting lists for services such as Ophthalmology and Audiology excessive. While we are fortunate to be in the position to attend clinics privately, the current waiting list for Ophthalmology can exceed 18 months, sometimes reaching two years. This is unacceptable. Harry attended an optician when he was three months old and he was prescribed glasses immediately to address his long sightedness. I dread to think the damage that may have been caused to his sight if this had been left untreated for a further 18 months or two years.

“Also, as our babies have narrower and shorter ear canals and lower set ears, they can be prone to fluid in the ears and require frequent testing following the newborn screening test in the hospital. The recommended age for re-testing is eight months but babies are having to wait until they are 10, 11 even 12 months of age to be seen. This delay, if there is an issue identified, can have a detrimental impact on their comprehension and so speech development is delayed as a result.”

Looking forward, one of the bigger challenges she sees Harry facing are people’s attitudes towards him.

“As much I would love to control that and protect him, I can’t. So 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 show his abilities. Because if kids know better, they will do better.

“The language people use, sometimes unintentionally, does little to help break down barriers faced by families of people with Down syndrome. I tell my friends the importance of using ‘person- first’ language in the hope that they in turn teach their kids that Harry has Down syndrome, he is not Down syndrome. Generalisations like ‘They’re always happy’, they’re so loving’, while well meaning, can be annoying. Because trust me, Harry is like any other baby with a full range of emotions. He cries if he’s hungry, he laughs if he’s happy, he shouts for attention and wails if he’s hurt, just like his sister.

“And yes, the future is uncertain. Bright but uncertain. But the same can be said for my daughter’s future — who knows what’s around the corner for any us? I do know that while before I may thought happiness and success were measured in terms of academic achievements, career progression, possessions and “stuff”, now I know that my kid’s happiness, and whatever it is that brings it, is what truly matters. That should be what life is all about — for all of us.”

Twelve months ago, Orla said she wished she knew how amazing life with Harry would be.

“He has truly brought something indescribable to our family and has brought everyone so much closer together. I wish I had known that the biggest change this baby was going to bring was in me. A change for the better.

“I see life differently now and have a different perspective on everything, even though 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. That’s what has made us special.”

Follow Orla on Instagram, see: athomewithharry

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