Our son Conn stares you right in the eye and demands your full attention. Our son Conn has the most beautiful blue eyes you will ever see and enviably long eyelashes. Our son Conn has the most amazing smile and an incredibly infectious laugh. Our son Conn is adored by my husband and me, his twin brother Ruairí, two sisters Doireann and Róise and our extended family.
Our son Conn also happens to have Down syndrome. It is a part of him but it is certainly not something that defines him. On a cold Friday in January 2019, our twin boys Conn and Ruairí were finally born, a little early at 36 weeks but Twin One (Conn) was struggling to grow and needed to come out so the induction date was set.
I’d been scanned twice a week for the last 10 weeks of the pregnancy due to Twin One’s complications so we were relieved to have made it this far. On induction day, we arrived at The Coombe early and ended up in the delivery suite ahead of schedule. All went smoothly with Conn arriving into the world crying and peeing — just like he should.
Twin Two (Ruairí) was a bit trickier, coming out leg and bum first and took a few moments to cry, which feels like a lifetime when you are waiting anxiously to hear that sound. We were so relieved at their safe arrival.
When you are expecting twins, there are a lot of medical professionals in the delivery room as standard. There is a team for each baby as well as a few onlookers. I counted 14 staff at one stage. The mood in the room changed shortly after Ruairí’s delivery. A hushed conversation started between Gary and a doctor and finally the doctor came over to me and said something like, “Twin One has suspected Down syndrome”.
This is not what you imagine hearing when you have just delivered your beautiful babies safely after carrying them for almost nine months. A senior consultant was requested to confirm the diagnosis, which he did after a very short time. Hearing that your little baby has Down syndrome is not an easy thing.
I think it would have been even harder to find out while I was pregnant as all you have is the diagnosis and not the baby to love but if we had known before the twins’ arrival, we would have had some time to research and be more prepared. We did not have a clue what to do next to help Conn.
Luckily, support quickly came from our families and also the community around Down syndrome in Ireland. Within hours I was linked to an online community of parents who knew exactly how we felt and knew the practical first steps for Conn. The next morning I was armed with a list of medical tests that Conn needed before he was discharged from hospital. I had never known the added health complications that people with Down syndrome have to fight through every day.
It starts from the moment of conception when the extra copy of the 21st chromosome is made and this means that there is only a 54% chance that the baby will make it to term. After birth, heart, kidney and brain scans are all completed along with ongoing and regular ophthalmology, audiology, thyroid checks and much more.
The chances of leukemia, arthritis and coeliac disease are all multiplied and a compromised immune system is pretty much a given. After a few weeks, it became apparent that while Conn’s medical needs were being met and these appointments were coming through, we had not heard from our Early Intervention Team who would work on Conn’s physical and intellectual development.
After a number of phone calls, I discovered that the waiting list to access these services in our area was on average 10 to 12 months and as there was a delay with our referral we were three months further down this list than we should have been.
Frustrated by the lack of state support, I reached out to Down Syndrome Ireland to see if they could help us bridge the gap for Conn’s development and thankfully they could. Our local branch runs a weekly Early Development Group, which offers a huge support for parents and circle time with a few modifications for our kiddies. Songs and nursery rhymes are sung using a sign system called Lámh.
Lámh teaches an action along with key words to help children with communication delays to overcome frustrations and start speaking sooner. In addition to the weekly group, an Early Years Specialist for Down Syndrome Ireland, Olive Buckeridge, has also run communication workshops in our branch. It is groups and workshops like these that help children with Down syndrome reach their developmental milestones and it was during one of Olive’s workshops that Conn said his first word, “bubble”.
Conn is doing great. He finally started with his Early Intervention team just before Christmas and they are amazing.
He has come on so much in a short space of time and is now sitting and through his local speech and language therapist, it was finally diagnosed that he is aspirating fluid and food into his lungs. Now that we know this, we can manage it carefully and work together to resolve it.
Today on World Down Syndrome Day, please take the time to celebrate those around you who have Down syndrome.
Know that they are stronger than you will hopefully ever need to be, know that they have been fighting for survival since the moment of conception, know that they have many minor and major health complications and know that they deserve your respect, love, friendship and kindness.
Ireland’s Purple Run, to raise awareness of World Down Syndrome Day, has been postponed due to the Covid-19 pandemic. Even if mass gatherings hadn’t been cancelled across the country, the Purple Run would have had to be called off regardless, as so many people with Down Syndrome have serious medical conditions that put them in the high risk category. To find out more about Down Syndrome Ireland, please visit www.downsyndrome.ie.