Imagine a world without Josee

Josee Hope was determined to prove doctors wrong...

Joelle Kelly, 37, Hervey Bay, Qld

I was numb as I left the consultation room.

The last thing I had expected was for the scan to show any problems.

My first two pregnancies had gone so smoothly, why would my third be any different?

Just an hour earlier, my husband Lewis, now 40, and I were enjoying watching our tiny baby wriggle and dance on the screen. After a little while Lewis kissed me on the cheek and left so he could get back to work.

I waited patiently for the 12-week scan to finish but it seemed to be going on longer than I thought it would.

Finally, a sonographer came to see me. ‘I’m sorry, but there’s something wrong with your baby,’ she said.

My heart sank at the words and I burst into tears as she explained what they had found.

‘The combination of the scan and your blood test shows that your baby has a one in two chance of having trisomy 21, that’s Down syndrome.’

My world was crashing down.

Come back to the hospital, I messaged Lewis. Then I messaged a friend who was minding my other two kids, Tallara, now 14, and Max, now 12.

They all came rushing over and I broke the news.

‘Down syndrome?’ Tallara asked.

‘Yes,’ I told her through tears.

Newborn Josee (Credit: Supplied)

‘But my friend at school has Down syndrome and we love him, why are you sad, Mummy?’ she asked.

It was such a simple question and it was true. She’s right, why am I so sad? I thought.

But I couldn’t help but grieve about the diagnosis. I felt like I was giving up on having a child who would live a happy, independent life and it really scared me.

We were travelling to Tasmania the next week for a holiday.

I had told the doctor I was going to get a second scan done there to make sure.

‘A lot of people don’t want to wait that long,’ she told me.

I was confused for a moment before I realised she was talking about me getting a termination.

It was too early for us to think of doing anything like that, so we didn’t listen. Instead, we stuck to our plan of getting a second opinion the next week.

But the next scan brought more bad news.

We learnt that on top of Down syndrome, our baby had excess fluid throughout her body, a fatal condition known as hydrops.

Devastatingly, we learnt that she would soon pass away in utero, most likely in the next few days.

The doctor also told us that our baby was a girl.

‘Let’s call her Josee,’ Lewis suggested. It was a name that we had both always loved.

‘Yes,’ I agreed, ‘Josee Hope.’

As we saw her little body on the screen, we both said our goodbyes, thinking it would be the last time we’d see her.

Joelle and Lewis with Josee (Credit: Supplied)

The next few days passed and then the next few weeks and there was still no signs of a miscarriage.

I was making the most out of every extra day with my baby. I would take my bump to the beach and talk to it as I floated in the water.

‘You are worthy,’ I told my blossoming belly. ‘You are loved and we want you here.’

At my 19-week scan something miraculous happened. All the extra fluid had disappeared and there was a chance Josee might be okay.

‘Don’t get your hopes up too high,’ the doctors warned.

The possibility of having a termination was still being suggested to us, even though Josee’s chances were looking so much better.

But there was no way we were going to consider it now. I had faith in her and I told her so every day.

Then in January 2013, a week after her due date, little Josee Hope came into the world. She was a healthy three and a half kilos with beautiful blue eyes and lots of brown hair sticking straight up into a mohawk.

‘She’s perfect,’ Lewis said as we both stroked her little face.

And she was, the Down syndrome no longer mattered to me. I loved her just the way she was.

Luckily, Josee did not have any medical complications associated with the condition and we were able to take her home a few days later.

Joelle with Josee (Credit: Supplied)

Her brother and sister adored her, taking turns giving her cuddles. She was a happy bubbly baby and she quickly grew into a bright and cheerful toddler.

Josee is now three and we couldn’t imagine life without her. She adores dancing and singing along to Hi-5 and The Wiggles and makes friends very easily.

She doesn’t really understand that she is any different to her siblings just yet, but we hope to explain it to her in the most positive way so that she never feels alienated or left out.

I couldn’t imagine a world without people like Josee in it, and to think that many children with Down syndrome aren’t given a chance upsets me.

I’ve started a Facebook page to share Josee’s journey and to spread awareness that a Down syndrome diagnosis does not have to be a tragedy.

My hope is that Josee’s life might inspire and reassure other mothers who are facing that diagnosis.

Josee is a bright and cheerful toddler (Credit: Supplied)

When Tallara first asked me why the thought of a child with Down syndrome made me sad, I thought that she didn’t really understand the situation.

But I now realise it was me who didn’t understand.

Josee is the light of our lives and we wouldn’t change her for the world.

Originally published in that’s life! issue 19 – May 12, 2016

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