baby

'A test showed my baby may have Down syndrome. It was assumed I'd want to terminate.'

As told to Melanie Dimmitt.

I was 38 and peri-menopausal when I fell pregnant with my fourth child. My period had disappeared and as the months rolled by, I started putting on weight. I thought, what’s going on? Is this part of the menopause thing? 

A friend suggested I take a pregnancy test, to which I said, don’t be ridiculous. But I humoured her and sure enough, it was positive. I was 10 weeks pregnant. 

Two weeks later I was sat in the reception area of a radiology clinic, waiting for the results of a nuchal scan, when a radiologist called me into a consulting room. 

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“Look,” he said. “The ultrasound was fine but your blood test result is showing you’ve got a one in 13 chance of having a child with Down syndrome.” 

I just stared at him. I went blank as I tried to crunch these numbers. Without missing a beat, the radiologist asked me, “Do you want to abort?”  

I kept staring at him, internally baffled. I’m still trying to get my head around what you’ve just said, and you’ve gone straight to termination? I told him I wanted more testing done. I asked, what are my other options? 

Amniocentesis was one, but it came with a risk of miscarriage. Another option was a non-invasive prenatal test (NIPT), which required taking some blood and shipping it off to the US. Okay, I said, I’ll do that one. 

At 14 weeks, the NIPT came back as 98 per cent positive for Down syndrome. Unlike that radiologist, my obstetrician delivered this news in a neutral fashion. He presented the result and told us that if we did want to terminate, we’d need to let him know by 19 weeks (new legislation in NSW allows abortion up to 28 weeks with the approval of two doctors). 

He also sent my husband and I to a psychologist to talk through the emotional rollercoaster we had embarked on. I was devastated. Every time I’d be out and see a little baby, I’d burst into tears. Not having really known anyone with disabilities before, I was heading into unknown territory – and terrified. 

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My husband took the news even harder. Where he grew up, in Lebanon, people with disabilities are not treated or looked after very well. He was saying things like, “We’re not going to be able to go on our holidays, we’re not going to be able to go out for dinner, we’re not going to be able to do anything.” 

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Google ‘Down syndrome’ and it’s easy to see why he felt this way. 

Most of the stuff you’ll find about this diagnosis is very clinical and negative. You’ll read that your child can have this or that, there’s a high chance of getting this, there’s a high chance of getting that. You’re bombarded with future horrors and it’s very overwhelming.

My husband wanted me to do the amniocentesis test so I did, at 17 weeks, when I’d read it was safer. He was clinging to hope and I was too, because we all want a ‘healthy’ and ‘normal’ child. But again, the result was positive. We had a decision to make.

I would never impose on anyone about what they should do in this scenario. The advice that one of my close friends gave to me at the time was: ‘You have to ask yourself, what decision can you live with?’ And I just knew that because of my religious beliefs, and my personality, I would not be able to live with aborting my child. 

Some family members were not supportive of this decision. I kept quiet around them. I didn’t brainstorm potential names or share how I was decorating the nursery. In certain circles, there was no baby talk. 

When it came to the 19-week scan, I was nervous that the obstetrician was going to bring up termination. But when I walked in there, he just looked at me and said, “Mrs Diab, do you want to have this baby?”

I said yes. 

“Well congratulations,” he responded. “You’re having a baby.” 

It was the first positive thing I’d heard and I was halfway through my pregnancy. I walked out of there with a weight lifted off my shoulders. But I still didn’t know what was coming. I felt lost and nervous – like I was on a boat, floating in the middle of the ocean, not knowing how to steer it. I wasn’t happy with what I was reading online. I wanted to find real families and ask them what they were really going through. 

I was lucky enough that a mum in one of my girl’s years at school had just had a little girl with Down syndrome. When I told her what was going on she said, “Why don’t you guys come over for a coffee?” 

When my husband and I went to visit her home it was buzzing with activity. These people were doing normal things that everyone does. Add to that, this was their tenth child (and they went on to have two more). If these guys could do it, surely we could too?

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Our school connected me with another set of parents whose son, in his 20s at the time, has Down syndrome. I invited this couple over for dinner and my husband and I grilled them for information. They said their son had gone through some depression, but he was getting treatment and they were very positive. They loved their son and they had a good life.

These were happy families living their lives and fulfilling goals and dreams. Their children with Down syndrome were just like any other member of the family. We were seeing that this wasn’t what we’d expected. 

I delivered Jasmine naturally, at full-term, with my husband by my side. There was a respirator in the room because she had a hole in her heart (common with kids who have Down syndrome) and the doctors were concerned she’d have problems, but the birth went well. 

Jasmine arrived just like any of our other kids. Ten fingers, ten toes, big chubby cheeks... and hungry! She was doing everything she was supposed to and the nurses were over the moon. 

Two days after we came home we had to go back to hospital, as Jasmine’s belly button got badly infected. But in her five years since, this has been the only medical issue she’s had. 

Children born with Down syndrome are all different, just like any other kid. Some of my friends have children who’ve needed major surgeries. One has a daughter who is five and not yet walking. Everyone has different challenges with their children. It’s like a lucky dip – you just don’t know what you’re going to get. 

During my ultrasounds I was told that Jasmine would have an extra digit on her left hand. At one point her liver appeared enlarged. Every time I went for an ultrasound I was told something new but she had none of these things – only a small hole in her heart that closed by the time she turned one. What the ultrasounds couldn’t show me was all of the good things this experience would bring.

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It’s very easy, especially on days when the shit’s hitting the fan, to feel sorry for ourselves and wonder, why is this happening to me? But Jasmine is a happy, healthy five-year-old with the most loving soul. She’s incredibly responsive to other people’s needs (of all of my kids she’s the only one to say “bless you” when I sneeze). 

She gives me hugs and says, “I love you mum”. It took her two years to say mum, and when she did it was the best thing ever. Even if our kids can’t say it, they show it. They love us like crazy. 

There are no guarantees with any child. When I was pregnant with Jasmine and weighing up our options, I was thinking, how do I know one of my other kids isn’t going to have an accident and become disabled? 

For me, it felt wrong to deny a child the right to live because they have a disability because that could happen to anyone, at any point in their life.

Imagine if every pregnant woman went for her nuchal scan and was given a list of possible things that her child could be at risk of. When faced with the prospects of cancer, dementia and mental illness… would any woman continue with pregnancy? 

It’s so unfair that parents like us go online and see things like this. What we need is access to real people who have real kids and real experiences – and these days, it’s much easier to connect. 

There’s even an app for parents like us, called AbleFinder, that matches you with like-minded people raising kids with disabilities. You can ask questions and be met with answers and support from parents who just get what this journey is like.

To parents who have recently received a diagnosis for their child, I say DON’T GOOGLE ANYTHING. Talk to real people and try not to be scared. 

There’ll be countless ‘ifs’ and ‘buts’ and question marks, but no one can tell you what your child’s future will be like. This is your child and you have one job – to love them. Everything else will fall into place.

You can follow Nirvana and Jasmine’s story @jazzy_designer_genes_rock and support Nirvana’s childrenswear label  @littlelordandladyaustralia.

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