‘Down syndrome does not define our children’
Four mothers explain the vital importance of support groups for families when faced with a shock diagnosis, writes Denise Smith
On September 7, 2018, Suzanne O’Brien went into labour and delivered her baby at home. Later, the mum-of-four was rushed to hospital, where it was revealed that her son Oscar had Down syndrome.
“Oscar was born very quickly and was delivered by my 16-year-old daughter, Aisling, who was the only one at home,” says Suzanne.
Dublin Fire Brigade talked Aisling through the process over the phone and explained how to tie the cord. The whole labour lasted 12 minutes.
“We were brought to hospital to be looked over and everything seemed perfect until the after-hours doctor entered the room and said, ‘Did you notice something wrong with your baby? Have you ever heard of Down syndrome?’ I zoned out, I couldn’t process what he was saying. I thought, this can’t be right I was 34 this only happened to older people, right?
“The doctor left the room and we were just numb, we did not speak one word. The midwife said, ‘we have a bed ready on the ward, we need to bring you down and your husband needs to leave now, it’s 10pm, everyone is sleeping.’
“That was the loneliest night of my life. I was placed in a ward with five sleeping ladies and their babies. The only advice I got was to not go on my phone to search anything. My beautiful baby was lying in his crib next to me and I was so fearful of what the future would hold for him.
“My children came to visit Oscar, we let them meet Oscar as their brother, not the child who had Down syndrome, they were besotted with him. He was so perfect. He was our son, no matter what.
“He stayed in neonatal for 17 days, it was a tough time as Oscar seemed to have test after test. We met with a social worker who told us we would be linked in with a service provider but there was a waiting list. We were excited to bring Oscar home but the fear of the unknown was hard, we felt like we were left in limbo.”
After months of struggling to access services and supports, the devoted mum found the Down Syndrome Centre.
“We met with other parents who were starting out on this journey and others who were a little further along. This is where the idea of the parent and toddler class came from. I realised the importance of talking with other parents and how valuable the opportunity to share and learn from each other’s experiences is.
“We are delighted that Down Syndrome Ireland has given us the opportunity to run a weekly parent and toddler class in its offices in Ballymount. We hope to have some keynote speakers attend and give parents the opportunity to talk and most importantly the opportunity for our little ones to play. The baby group is subsidised by Down Syndrome Dublin (DSD). The group is a committee of parents of children and adults with Down syndrome and is voluntary. The group will run every Tuesday between 10am and noon and the first session will take place on September 10.
“We hope Oscar has every opportunity to reach his full potential and has the chance to live a healthy and happy life. We are behind Oscar 100 per cent,” adds Suzanne.
Marcela Granada (37) learned of her now one-year-old son Jaxon’s diagnosis just 15 minutes after having a C-section.
Speaking of the initial diagnosis, the mum-of-two, who lives in Ballyfermot, explains: “I was devastated. It took me a long time to accept. I couldn’t even look at my child; until this day, I regret all those feelings. I shed many tears for the child I thought I was going to have.
“I remember feeling a sense of hopelessness. Hopelessness for what my son’s life would be like. Hopelessness for what the diagnosis meant for me and my family.
“All those concerns and feelings I had after the diagnosis were erased and replaced with his health issues. Jaxon was born with congenital heart disease and after a few weeks of being born he was brought in to Our Lady’s Hospital where we were told he had three holes in his heart [a triple defect], VSD [ventricular septal defect], ASD [atrial septal defect], and PDA [patent ductus arteriosus].
"He had open heart surgery at four-and-a-half months. Unfortunately, he got a wound infection and it became sepsis. He had to be opened up again to clear the infection and had to spend an additional two months in the hospital under heavy antibiotics. It was the worst two months of our lives. But as you can see, he is a little warrior and he is doing great now. He is our family’s biggest inspiration.
“Jaxon has absolutely changed my life. He has made me a better person and a better mother to my older son. He has to work so hard to achieve the milestones we took for granted with our other kids.
“Because of him, I am training to climb Kilimanjaro next year with other parents to raise some needed funds for Down Syndrome Ireland. Something I would have never, ever thought about doing before. But if he can be a warrior, so can his mammy.
“If it wasn’t for the support I received by other parents going through the same, I don’t know where my head would be. As a parent, you want to speak to a person who is experiencing the same heartache concerns or the same struggles as you are. Someone that can say, ‘everything will be okay,’ and you believe it because they have gone through it too.
“Psychologists might work for some but in my opinion group therapy has been a blessing, which is why our group at Down Syndrome Ireland is so important.
After a routine scan, Sarah King (34) was dealt the devastating news that her baby had a possible foetal abnormality.
“The consultant confirmed that on the nuchal fold the measurement was larger than what was considered normal and explained that the baby could have Edwards syndrome, Trisomy 18, Turners syndrome, congenital heart defect or Down syndrome. She went on to say that some of the abnormalities are not compatible with life and usually do not survive outside the womb. She said that it was quite possible I would miscarry. It felt like we’d been hit by a ton of bricks,” says Sarah.
“I know it sounds cliché but that was the day that changed me. We decided on the way home in the car what the worst case scenario was and what the best case was and we both agreed in very little words that a baby that had a chance was our best hope; nothing else mattered. All we had from that day going forward was hope.
“Almost a week later I got the results via a phone call from the consultant confirming that the baby had Down syndrome. To be honest, I was so happy that our baby would have a chance at life. I was completely oblivious to the fight that my baby had ahead.”
Frankie, now one, was diagnosed with a congenital heart defect and underwent heart surgery when she was just five months old.
“When we came home from the hospital we began to wean Frankie onto solids, which was hard work initially as her tongue kept protruding due to low muscle tone; this can be a characteristic of a baby with Down syndrome. But persistence on our part and her part paid off and she really took to solids well. Frankie was still not taking liquids though.
“For this reason and due to multiple chest infections, our speech and language therapist from Crumlin decided to perform a videofluoroscopy which is basically an x-ray of the chest area while one eats or drinks. Frankie was aspirating on both fluids and solids so her nasogastric feeds have been increased again and she is only allowed food for oral stimulation. We possibly could end up with a more long-term tube for feeding via the stomach while we give Frankie’s swallow and muscles in her mouth time to develop and strengthen.”
Sarah adds: “Frankie is still not linked in with early intervention and had Frankie not had a heart condition we would have had no physiotherapy, speech and language or occupational therapy and most importantly would have been just left alone to get on with it.
“I genuinely believe that if a child with Down syndrome got the care and services that they needed without having to wait ridiculously long times, there would be a smaller developmental delay.
“The parent and toddler group is a safe place for our kids to play while mam or dad can have a chat and a cuppa. It’s a great opportunity to see how fantastic our kids are and how promising the future will be.”
Lynn Martin (38_ is mum to the brave and beautiful one-year-old Fionn. Speaking of her little boy, she says: “Each individual child with Down syndrome is exactly that... an individual. Just like every toddler, he will learn things at his own pace. Fionn is a visual learner and easily acquires new skills. Similar to all toddlers, he will have tantrums when things aren’t going his way but can also be excited to show off his new abilities.
“Fionn is the light of our lives. He is funny, giddy charming, stubborn and a bit of a flirt. His smiles and giggles would melt the hardest of hearts. I wake up every morning excited at the prospect of what Fionn might achieve today. Little things that others take for granted are huge to us, giving a high five, sitting up independently, eating finger food are all massive achievements and are celebrated accordingly.”
Lynn recalls: “My initial reaction was anger and grief. I was angry that our baby was going to be born with Down syndrome, a baby that was wanted, loved and longed for.
“This anger quite quickly gave way to acceptance and soon came excitement that we were going to have our first baby. I grieved the child I had imagined. We say that in our house we are taking the scenic route, it might take longer to get there but it is so much more beautiful along the way.
“The best support came from other mothers of children with Down Syndrome. I was referred to this Facebook group called Down Right Perfect 2015; this group helped me get out of a very dark place. They assured me that my baby boy will be OK. That all those feelings I had were perfectly normal and nothing to be ashamed of.
“They also taught me to be my son’s biggest advocate, to fight for the services he deserves, to fight for the appointments he needs. It is the group where I met these wonderful ladies. Another organisation that has been amazing throughout this journey is Down Syndrome Ireland. The support groups they offer, the subsidised therapies, and the parent courses have been invaluable to me and my family.”
For more information on the parent and toddler group see downsyndrome.ie/event/dsi-parent-and-toddler-group/