‘Stop treating my child’s Down Syndrome as a tragedy’ – One mother’s story

After a textbook pregnancy, my second child arrived on 1st July 2016 — a couple of weeks earlier than expected. After a very quick labour, the baby was placed on my chest. I remember looking down and thinking he resembled my brother.

However, I noticed his eyes were slightly almond-shaped and not fully opened. His tongue was protruding a little, but I thought perhaps he was just hungry. A typical boy!

The midwife took him again for a second look and exchanged whispers with her colleague. I remember her saying there are some features we would like to have checked by a paediatrician. I remember then turning to my husband and saying “he has Down Syndrome”.

I was inconsolable. I remember thinking I’ll never cope.

At that moment my entire world turned upside down. Without a diagnosis, I already knew the baby had Down Syndrome. A very experienced paediatrician sat at my bedside, lifted the baby’s arms up and down and began to explain his muscle tone was low or “floppy” as he described it. A very clear sign the baby wasn’t what we expected.

Shock

I was inconsolable. The next few days I was a total and utter mess. Why us? I thought. What had we done to deserve this? Fear sets in, disappointment, anger, shock – a real mix of emotions. 

Apart from having all the hormones that come with a new baby, you are dealing with a diagnosis on top of that. I believed I would be handed a perfectly healthy baby like my first child and the disappointment was indescribable. I remember thinking I’ll never cope.

In those early days I was told by many medics you grieve the loss of the baby and the path you thought you would have for them. There were all sorts of analogies like “it’s like you’ve been promised a holiday to Australia, and you find out you’re going to Holland” etc. I wondered why they thought I was grieving when I had a new baby. Now I understand this more.

The hospital stay was three long days of checking the baby over. I lay in my room and googled everything related to the condition. It was utterly terrifying – I realise now that this wasn’t perhaps the best thing I could have done as lots of the articles were overwhelmingly negative.

There was a list of medical conditions related to Down Syndrome; heart problems, bowel conditions, hearing and sight problems, dementia, leukaemia (this one scared me the most).

Guilt

We named our little boy Henry. We called our parents and I remember how devastated I felt for them. What had I done to my family? I’ve ruined their lives, my daughter’s, my husband’s. There is an enormous sense of guilt that comes with a diagnosis.

I felt this was my fault. How did I not know my baby had Down Syndrome? Our 20-week anatomy scan looked perfect; there were no indications that anything looked unusual. This should not have happened! I should have known.

Shortly after coming home, Henry was diagnosed as having a partially blocked duodenum – duodenal atresia, which would require surgery. He spent six weeks in Temple Street Children’s Hospital, so our first few weeks were spent driving in and out to see him.

The time at home without our newborn baby gave us time to grieve, cry all the tears, and spend time researching what the future might hold. I remember my daughter would peep into the Moses basket and I’d have to explain to her that her brother was ‘a little sick’. I felt so robbed for her as well as myself.

However, being in the hospital provided us with huge perspective. Henry has been quite fortunate in that he hasn’t had any heart or other serious complications. Believe me, there are people dealing with far more complex diagnoses in there.

The staff and nurses in St. Michaels B ward were absolutely fantastic looking after our precious boy. There is no doubt that going through such a massive shock in your life alters you as a person. I felt closer to my husband as I felt he was the only one I could really feel sad with.

He was very accepting of the diagnosis and treated Henry as he would any newborn, focusing on physiotherapy to boost Henry’s muscle tone. He is my rock. I couldn’t have gone through this without him.

Pure joy

Days and months pass, and now,  two years on, things are so much better.

You learn to deal with the “loss”, and what we have gained is far much more than we could have ever imagined. Henry is a pure joy and surprises us every day. What I want for all my children is to be healthy and happy.  We try not to focus too much on the typical milestones – I would drive myself mad comparing.

Every child is an individual with or without a diagnosis. There is too much focus on milestones and competition among parents, I suppose it’s the times we now live in.

Yes, I worry about the future for our son from time to time, but I try to live in the moment. Nobody knows what is in store for them in life! We are a very typical family. We go for family dinners, holidays together, go to the park.  

At times I feel other people’s attitudes and negative comments make this journey more difficult. People can stare, or tilt their heads in sympathy, and say how awful it must be.

Thankfully, we have learnt to cope with these dated/ignorant attitudes. Those with Down Syndrome can go to mainstream school and can live very fulfilled lives. We need to be more accepting. Stop treating this as a tragedy.

Lucky

We are incredibly lucky to have an amazing group of friends and family who have supported us since day one. Yes, some of them were a little awkward and didn’t know what to say or how to act around us. But most have just treated Henry like any other child.

A friend picking him up like any other baby and cuddling him when he came home from the hospital was just what we needed to see. Those messages of congratulations in the early days are what we wanted to hear. The sorry messages will stick with us, although there were very few.

Parents of children with DS just want their kids to be treated like anyone else in society. Yes, they may look a certain way, but please approach parents of children with DS with a positive attitude.

Support

Although Henry may look a little different, he constantly amazes us with the progress he makes.

The DS community is an extremely supportive one and we have met a fabulous group of new friends through the centres. The HSE (St John of Gods, Glenageary), and the Down Syndrome Centre (Cabinteely, Dublin 18, privately run), have provided amazing support and facilities to help with Henry’s physiotherapy, speech therapy, and also occupational therapy.

We have a better life because of our son and appreciate everything that little bit more. People’s misconceptions about Down Syndrome don’t take into account all we see on a daily basis. Although Henry may look a little different, he constantly amazes us with the progress he makes.

His ability is far greater than anything I expected it would be. His infectious laughter and energy provide us with so much joy, and he has given us such an appreciation of his development progress. In October, Henry will start in the same Montessori as his big sister went to, and we know he will thrive in this environment.

We want to protect this beautiful little guy. Protect him from the negativity.

Happy

I know I am only one voice, but I figure it’s time to banish any misconceptions or prejudices about Down Syndrome that society may have. When we look at Henry, we see a happy, healthy, infectious little boy.

We now feel truly blessed he has come into our lives. Down Syndrome brings with it some challenges, but it is certainly not a tragedy. We want to protect this beautiful little guy. Protect him from the negativity and create an environment he can thrive and live independently.

To any new mums who have just received this diagnosis, please don’t panic. Things will be ok. Things will be more than ok. Your child will be your guide on this journey. 

Those who happen to have Down Syndrome have the ability to see the good and beauty in the world, to radiate joy and happiness and to offer a unique perspective on life with the ability to change others’ perceptions. That doesn’t sound like a disaster to me…”

You can find more support and information on Down Syndrome here. Originally published March 2019