Ireland – Testimony of a mother

To read on Independent website:

‘I feel guilty for ever shedding a single tear over her diagnosis’

Irish mum Joann O’Callaghan had no idea what to expect when she learnt her little girl had Down Syndrome

 Published 12/07/2016
mother

Joann O’Callaghan and her daughter Ellie Talbot (2) from Clondalkin.

I remember it like it was just yesterday – the moment I was told that my baby girl Ellie had Down Syndrome. It wasn’t just because I felt the news was delivered in the wrong way – it was so abrupt and sudden – but today I feel guilty for ever shedding a single tear over her diagnosis.

I loved Ellie from the second I saw her. When I was pregnant, we had no idea that there were any problems, but just moments after she was born, it became clear that something wasn’t right.

Doctors took her away for a physical examination and although we had to wait for the blood test results to confirm it, they could tell she had Down Syndrome.

But it didn’t matter – she was my beautiful little girl and nothing was ever going to change that fact.

Of course, when the medics told us about their suspicions, it did bring a whirlwind of other worries and fears.

Ellie is one of the 21 faces in the Down Syndrome awareness campaign. 2
Ellie is one of the 21 faces in the Down Syndrome awareness campaign.

Almost immediately, the endless round of medical checks began and each test brought with it an overwhelming feeling of stress.

I remember the happiness when the results were all clear and then the panic that set in when the doctors had concerns over others.

Once we were discharged from the maternity hospital, the appointments just kept coming.

It felt as though we were back in Our Lady’s Children’s Hospital in Crumlin every second week. There was no time to actually enjoy the new baby girl we had just brought into the world and I get sad when I think this is a time that I can never get back with Ellie.

To be honest, I knew nothing about Down Syndrome before I had Ellie. I knew that the people who had it had similar characteristics, and in my ignorance that was all I knew.

It was explained to me that it was an intellectual disability and that Ellie would find it that bit harder to reach her milestones.

I was told that early intervention was extremely important and that this would mean recurring appointments with physiotherapists, speech therapists, occupational therapists and any other additional services that they felt Ellie needed.

Ellie has been exceptionally lucky as she is in the care of Stewarts, an early intervention service in Lucan, Co Dublin, which she’s attended since she was eight months old.

So in our case, access to early intervention services has been excellent. For many others, it’s not that simple.

I speak to other parents who have no services at all, which is absolutely disgraceful, especially when we are all told how important it is.

That’s why the work of the Down Syndrome Centre is a blessing for all of us. The centre offers all of the services that are required so that our children can reach their full potential.

The first year of Ellie’s life was a complete blur. When she was nine months old, we noticed she suddenly stopped smiling and would give these subtle fright-like movements.

Like any new parents, my partner Darren and I were always extremely cautious, so we brought her straight to A&E.

Tests showed that she had developed a sever form of epilepsy in babies known as infantile spasms.

Treatment had to start immediately as these spasms could cause additional developmental delays. Ellie had to be admitted to Crumlin and stayed there for three weeks, where she was treated with steroid injections every other day.

It was a really difficult time for the whole family, but after a tough few months Ellie started to recover and really began to thrive.

With the first year behind us, slowly but surely, things began to calm down. Our routine with appointments just became the norm and we began to enjoy Ellie for the fabulous little girl that she is.

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