Posted on
06 March 2009, under
Fatherhood; More Fatherhood articles...
Daddy's Special Boy
"The news isn't good, your baby has Down Syndrome, I am sorry".
Having heard the above whilst cocooned with the wife in our car on a drab, grey Dublin street just over one year ago, I would never have imagined I would find myself where I am today. We had waited a week from the time of the Amniocentesis test to that phone call, and to finally hear the confirmation from the Doctor on the phone, set in motion a series of life-changing decisions and realities. The news the Doctor had given us was something we had only recently been asked to consider, but here we were now, locked in our car, as the grey streets around us reflected our souls at that moment, desperately looking for some direction or approval that we were going to be ok, faced with the life-altering news that our unborn baby had Down Syndrome.
So, my baby has Down Syndrome. What is this and what does it mean? To the layman, as I most certainly was at that time, Down Syndrome is an intellectual disability, caused by a triplication of the number 21 chromosome, affecting, on average, about 1 in 800 babies in Ireland. As we were reliably informed by the various Doctors throughout the pregnancy, by deciding to continue with the pregnancy (tragically we were given that predicament to consider) our baby could hope to achieve the mental capabilities of a 12-13 year old child and then remain at that stratum for the remainder of their life, which incidentally would also not be as long as a 'normal' person. We were told to expect heart conditions, poor eyesight, poor hearing, low muscle tone (known as 'hypotonia') and potential speech and language difficulties. We absorbed this news as we steadily followed the growth of our baby via numerous ultrasound scans, the seeming peace and serenity the baby was existing in contrasting turbulently with the chaos around our own lives during that time.
Attempting to come to terms with this news was unlike anything I have ever experienced. I had no semblance of a precedent to draw on, extremely limited experience of any kind of disabilities or special needs, and on a more basic level, I was still coming to terms with the fact that I was going to be a Daddy, let alone a "special needs Daddy" whatever that may entail. Myself and the wife got in touch with Down Syndrome Ireland and the Down Syndrome Dublin branch and through this organisation we arranged to meet with a Counsellor to try and make some sense of the situation we were thrust into. This was of enormous help to both of us and we were given the reassurance we needed to grieve the life we thought we were going to have and helped us take the first steps towards the new path laid out before us. We spent countless hours scouring the web for information, often delighting in the glorious stories and pictures we came across but equally finding ourselves faced with negative stories, opinion and experiences that scared us violently to our very core. The blessed curse of the web in stark reality!
Since our baby boy, Noah, was born we have had numerous appointments to fulfil in various hospitals and clinics across Dublin. He has been in Our Lady's Children's Hospital, Crumlin for heart exams, hearing exams and eyesight exams. He has physiotherapist and speech and language therapist visits from St. Michaels House, his service provider, and also still attends the baby clinic at the Coombe Women's Hospital, where he first made an entrance into our lives. Thankfully his legion of appointments have not turned up anything too dramatic, he has three small 'manageable' holes in his heart, potentially a slight hearing deficiency in his left ear and great eyesight as things stand. His physiotherapy is progressing well to the point he can now stand upright whilst holding onto the sofa and we are incessantly trying to get him to utter his first "Dada" or "Mama", to no avail so far but we plough on regardless.
Noah is now eight months old and I wouldn't trade him or any of his 'specialness' for all the sand in Egypt. He is a most delightful little boy and regularly now happily sits upright on his play mat playing and jabbering away with his toys. He has already established a gang of friends thanks to the Mummy's weekly tea and cake group and the best of our wishes go out to little Cathal for next week's operation. To be told at the very start of this adventure by a Doctor that he was sorry for me almost makes me laugh now when I think about it, because the truth is I am the one who is now sorry, sorry for everyone who cannot see Noah and share in his and our lives. That is the only thing about Down Syndrome that warrants any sorrow, and I for one am delighted that I have reached this reality now.
Martin Thompson
Martin Thompson's Personal Blog: www.themuse-mjt.blogspot.com/
Additional Information:
Down Syndrome Ireland - www.downsyndrome.ie
Down Syndrome Dublin - www.dsdublin.ie
St. Michael's House - www.smh.ie
Our Lady's Children's Hospital, Crumlin - www.olhsc.ie
Back to top ^