Wednesday, 15 October 2014

What to do if you have received a Trisomy 21 diagnosis...

If someone I know had received a Trisomy 21 diagnosis and wanted to know what to do, here's what I'd tell them, regardless of whether the diagnosis is pre-natal or ante-natal.

1. Google these words: "I regret keeping my baby with Down syndrome".
(You'll notice that the best Gooooooooogle can do is give you the regrets of people who didn't keep their baby with Trisomy 21. **)

2. Visit
Explore the page and have a look at the book we made! You can get the section which relates to your diagnosis situation, i.e. Birth Diagnosis, Prenatal Diagnosis etc. or the whole thing if you like.

3. If on Facebook, search for Down Syndrome and Trisomy 21 (probably separately). There are heaps of groups there and you can ask to join any of the closed ones. Send a message introducing yourself. Some will be region-specific but the moderators can point you in the direction of the right ones if it's the wrong region.

4. Read "Naturally Better", by Kristen Morrison, or if you don't have time to read it all go to and have a look around. (I read this book before I had any need to and I found it was the basis for my resolute acceptance of Jacinta's diagnosis.)

5. Arrange to meet some people with Trisomy 21 and arrange to meet some parents of people with Trisomy 21. Bear in mind that the older the person you meet, the less likely it is that they will have had the opportunity to access early intervention and the more likely it is that they will have suffered from the long-term developmental effect of society's low expectations of them.
If you can't arrange this through your social worker or genetic counsellor, call your local Down syndrome organisation. There are statewide ones and now a national one in Australia. Here's the link to the organisations worldwide:
They will be able to point you in the right direction.
Also, feel free to contact me via the comments to ask questions etc.

6. Search for a Down syndrome blog that resonates with you. Some of my favourites (from people I haven't met) are:
Noah's Dad
Kimchi Latkes
Down Syndrome Up Up And Away

7. Have a look at the Australian Government's Raising Children website.


So it may seem that, in looking at all these links, it's all a bit one-sided. It may seem that the bad news is glossed over and everyone's raving maniacally about how good it is, while secretly, at home, we're sitting at home in a dark corner rocking back and forth with our hands over our ears, wishing it was all over.

The thing to remember is who the bad news comes from:
It's the media,
It's the doctor who tells patients an increasing number of times per year,
It's the person on the forum who knows all about it because they terminated their pregnancy,
It's the person in your family who wants the best for you and doesn't want you to have pain or suffering,
It's your friend who also doesn't want you to suffer and maybe also doesn't want to have their 'perfect' reality encroached upon by someone 'imperfect' whenever you catch up from now on.

The thing to remember is that all these people get their information from theoretical sources, which can describe clinical features, but not experience. Another thing to remember is that doctors feel bound to give you the worst case scenario (except when telling you the side effects of medications, oddly), and will be sure to warn you of the dangers of any course of action to cover their legal backsides.

 The thing to remember is that the truth will come from those who have lived it. The newspaper reporter, the doctor, the mum on the forum, the well-meaning friend or relative, unless they have a child with Trisomy 21, don't actually have the information necessary to inform you fully about what life may entail.

It's like the study done a while back (may have been by a dodgy current affairs program) which found that it wasn't a good financial decision to have children because they cost more money than they make. Ummmm….yep. Kind of missed the point there.

So make yourself fully informed, and remember, if special parents get special kids, those parents are made, not born. Having children is daunting, regardless of their individual needs. Special needs might raise the bar, but like not wanting children too early then wondering why on earth you thought what you were doing was so important it meant children should wait, it seems that parents of children with Down syndrome/Trisomy 21 have just jumped in with both feet and found it's fine, once you're in.

And, to be clear, I am not impartial. It absolutely breaks my heart to hear mothers' stories of termination.  However I am not looking to collect friends who have children with any of Jacinta's diagnoses. I just know I'd rather the friends with the pain of heart surgery or chemo that than friends with the pain of irreplaceable loss, and guilt, which is where the bad news advice seems to lead.

So if you have had a diagnosis of Trisomy 21, in-utero or out-utero, I wish you happiness, I wish you wisdom and I wish you well.

(And if you want to contact me directly, if this blog isn't warts 'n' all enough for you, feel free to comment below.)

(Ooh, and anyone who can think of any step I've forgotten, leave it in the comments too!)

** Since writing this article, a newspaper article has been published in the UK, which incidentally vioates the UN Convention on Rights of persons with disabilities.
It highlights the story of one mother who, unlike pretty much the rest of the parents of children with Trisomy 21, wasn't up to the challenge and has publicly stated that she wishes she'd aborted her 47yo son. I sincerely hope he doesn't read the paper, or know anyone who reads the paper. Fingers X on that one...

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