September 2017

Question time

by Caroline Tuohey

 

Don’t prospective parents ask lots of questions? I know I did. 

What shall we name the baby? Should we buy a pram with three wheels or four? Which car seat is the safest?  How will I manage if the baby doesn’t sleep? 

Isn’t it funny how these questions relate to after the baby has been born, and is a part of the family? But what about questions involving the actual pregnancy, and the growth and development of the baby? Are prospective parents asking lots of those questions? 

From what I’ve experienced and observed, it appears not. And I’m wondering why? Are we assuming the doctor or care provider will tell us all we need to know? Are we too caught up in the ‘happy’ aspects of pregnancy to give the ‘too hard’, or ‘don’t want to know’ issues adequate attention? Or have we, as citizens in a country that offers world class medical care, simply become complacent about the complexity of creating a human being?

Being pregnant should be taken very seriously. It is not just about cute clothes and prams with cup holders. It’s about a human life – a life that might have a condition or illness which may require so much more than a designer nursery.

I am someone for whom pregnancy did not happen easily. Years of unsuccessful trying made me question everything. And I did a lot of research. This helped me realise that most of what you need to know about being pregnant, may not be told to you by your doctor – especially the subject of genetic disorders – specifically Down Syndrome.

There is a plethora of information available about Down Syndrome. Yet, the vast majority of parents with whom I have discussed this subject, were not adequately informed during their pregnancy. Now why? Why in this information-saturated, twittering, googling world we live in, are pregnant women (and their partners) still not being properly informed about Down Syndrome and other genetic disorders? 

Why did I receive a clear, easy to understand leaflet on Down Syndrome, and my sister did not? Why was I informed that ultrasounds are not definitive and she was not? Why are doctors so blasé when it comes to clearly explaining what risk factors mean? 

So what should you be doing to address this issue that is often glossed over?

Start by asking yourself this question: “Do I want to definitively know whether the baby I am carrying has Down Syndrome?” Say it again: “Do I want to definitively know?”  

Answering this question may take you hours, days, weeks, or months. Take as long as you need. But do your research, ask questions and think it through. If you conclude that yes, you do want to know, then you need to undergo either an amniocentesis, or a CSV test. Because all other tests currently available to the average person are, at the end of the day, nothing more than an educated guess.        

When you do your research, you will learn that the miscarriage risk factor for an amniocentesis or CSV is generally one percent (1 in 100). So now what? You want to have the test, in order to be sure, but don’t want to risk losing what could be a perfectly healthy baby? 

The answer is more research. Learn about all the genetic disorders that can be tested for. Learn about the various levels of severity of Down Syndrome and what that means for a child who may be born with it. Contact your local health centre to enquire as to what support is available for children with genetic disorders. Contact your local schools to learn what programs are in place for integration. Start learning about what changes you may need to make to your life if your child is born with a genetic disorder. You should be armed with as much knowledge and information as possible. Because once you have that knowledge and information, you have taken control of the decision you make (and indeed, the outcome). You are prepared. 

My sister wasn’t. All her screening tests read as normal. The risk factor (one in 800), her doctor blithely brushed aside as almost a non-event, and in her innocence, she didn’t question him further.   

Yet she gave birth to a baby with Down Syndrome. I took her phone call, and I will never, ever forget the anguish, fear, and absolute devastation in her voice. 

In the weeks to follow, baby Tommy’s health problems mounted. He was virtually deaf, blind, and needed open heart surgery to repair a hole in his heart.    

During these terrible weeks, there was little joy for my sister and her husband– every day was spent dealing with a raft of doctors and nurses, researching Down Syndrome, and putting in place contingencies to deal with what was shaping up to be months, not just weeks living in or near a hospital. 

And they did all this while struggling with fear and grief. As our family came to terms with the enormity of what lay ahead, I couldn’t help but feel we had all let Tommy down. Not asking the right questions, and having as much knowledge and information as possible, had let him down.

Aged three and a half months old, following complications from open heart surgery, Tommy died. His parents were with him to the end. Make no mistake, not having the correct information that helps you make informed decisions, can change your life forever.

 

© Caroline Tuohey

“A gender-equal society would be one where the word ‘gender’ does not exist: where everyone can be themselves.”*

I’ve always been aware of gender conditioning and actively tried to combat any lingering prejudices or stereotypes in my own parenting, even down to encouraging dolls with my boys when they were little. It’s great to read people writing about gender issues they’re experiencing with their kids. For too long these subjects have been discouraged or silenced. I’d love to publish some more creative writing on this topic, especially if you are struggling with a child who actively tries to move away from gender normative preferences. A society where everyone can be themselves thanks Gloria for those aspirational words.

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* Gloria Steinem