Wednesday, 26 October 2016

Forgot to touch wood!

Hey all,
A month or two ago I realised that for the first time in Jacinta's life she'd managed to clock up twelve straight months out of hospital. That's saying something when you're approaching 4 years of age!

Now, I'm not your throw-salt-over-your-shoulder, don't-step-on-a-crack-while-walking-under-a-black-ladder-on-Friday-the-thirteenth kind of person but as I say, I should have touched wood - but I forgot, coz I never do.

I actually thought I was going to be telling another knock knock joke - you remember the one where it's Luke - Luke Aemia, since Jacinta has been rather more tired lately and there have been some petechiae and a nose that wouldn't stop bleeding, but on the very same afternoon as I was calling the Oncologist to find out the blood results, the Cardiologist was trying to call me to tell me Jacinta needs another round of heart surgery.

The upshot is, bloods are nothing to worry about, but the membrane growing across her left ventricular outflow tract is likely to cause a problem if it's left there, so they want to take it out.
Should be a short procedure, but with all the scar tissue it'll take some time like it did last time. They have to cut through very carefully so they take....their.....time. Not much time on bypass though, which is good.

And because things are quiet at the moment, they want to do it in November - which is a couple of weeks away!!

Suddenly we've gone from no hospital on the horizon and everything mostly normal (bar the tiredness etc) to a pre-admission appointment in a couple of weeks and surgery any time after that. We've never had such a short lead time, but I'm grateful for it. Hanging, waiting on tenterhooks for a year is something I'd rather not repeat. I like to write things in pen!

So I'll update you as we need to and as it happens. See you in a couple of weeks!

Wednesday, 5 October 2016


Hi all, yesterday I realised something and I just wanted to share.

For a couple of weeks now, every time we go somewhere, I'd look back and see Jacinta with her arms out of her seatbelt. I'd tell her to put her arms back in, and she would, then she'd get a thumbs up and we'd be on our way again. This was not unchartered territory since each of my daughters had tried it on for a bit and then given up. After a little while instead of her stopping it, she started refusing to put her arms back in, so I'd go round and do it for her as I had already said I would if she didn't comply.
Then it got so as her arms would be back out again as soon as I'd returned to my seat and she was trying to unclick the whole thing.

I decided I'd need to go out and find a strap to connect the two shoulder straps - which we seem to call a Houdini strap. (In this part of the world we have two shoulder straps connected to another strap at the crotch.) But I remembered something that I'd noticed recently and not had the chance to correct and thought it might make it harder to get out.

I'd noticed on clicking her in that she had recently grown beyond the height of her shoulder straps. There's usually no mucking around where the car's concerned, either we're getting straight in or straight out, so spending 5-10 minutes adjusting the straps hadn't crossed my mind at the key moment.

I moved the straps to the next slot. The next time she was in the car I looked back and she was staying put, not even trying to get out. Every ride since her straps have remained in place. I asked her if the straps were hurting her before. She said 'yes'. Awesome.

Now I'd be lying if I didn't feel a little silly saying that after two previous children I only just worked out that it might be the problem.

Mother of the Year! Big clap for me! Better late than never....

So be aware! Shift those shoulder straps! (I'm sure most of you are right on it anyway.)

Monday, 3 October 2016

October just turned up - and it brought friends!

Well, you know me and Trisomy 21 awareness - lackadaisical bordering on cynically negligent. I was going to let this one go through to the keeper, having blogged at least twice this financial year....

But then things happened. They started a review of Medicare and someone suggested putting non-invasive prenatal screening (NIPS) for chromosome differences on the schedule, Sally Phillips (the actress we all know as 'Shazza who says f*ck a lot' from Bridget Jones' Diary and from the classic Australian comedy "Boytown" - I don't watch Miranda but apparently she's in that too) made a documentary about Down Syndrome and dared to give it to a UK TV station for broadcast next week, and the ABC ran an episode of Australian Story about a young adult couple with Trisomy 21 who want marriage and babies.

The T21 internet has pretty much broken. Seriously, I can't keep track of all the Facebook posts, threads, comments and which groups they're all in. I've been added to two more (very cool) groups this week!

And why? October is Trisomy 21 (OK, Down Syndrome) Awareness Month. And it's on for young and old.

And what gets my goat the most? It's not the parents of the adults who want marriage and babies, because frankly that's their business and I have the same aspirations as they started with and my child is all of 3 going on 20, so when I get my crystal ball I'm entitled to a public opinion.

It's also not so much that someone wants to add the NIPS test to the Medical schedule. This is a useful tool for those who are informed. The issue is that VERY FEW PEOPLE ARE ACTUALLY INFORMED. More on that later.

What really gets my goat is the reaction Sally Phillips' documentary (which hasn't even aired yet) has received from the British press so far. All of a sudden she's being labelled 'unhelpful' in an article entitled

Sally Phillips’s film on Down’s is ‘unhelpful’ for families, warns antenatal specialist.

Now Jane Fisher is from a group called Antenatal Results and Choices. This group is buddies with several manufacturers of the NIPS tests and has been accused of being anything but supportive of at least one person who wasn't keen to terminate her pregnancy. Her job is not to help people through their pregnancies to their natural conclusion.

She claims that it is unhelpful to make a parent's decision more complicated, when deciding whether their foetus is going to live or die. More complicated?? A life or death decision should be less complicated?? Are we a little production line, where a parent comes in after a test, is told the right thing to do and coerced into doing it, therefore making it easier on them somehow?  Who decided that was the ethical thing to do?

Next she claims that it risks offering the suggestion to those who have terminated that they have made the wrong decision. Now please don't think I am meaning to be at all callous about this, because I feel absolute heartbreak for those people. I do sometimes wonder when my little girl runs around charming the pants off people whether or not there are those around who have terminated a pregnancy and how that makes them feel. Maybe they look at her and assume it won't be fun and games forever, or maybe they feel a guilt they find hard to live with. I don't know.

But that is NOT our responsibility.

That is their responsibility. Sometimes we make bad decisions and we then have to live with those decisions - unless we were born in the 90s or later, in which case our parents will bail us out or we'll blame the establishment. (OK, sorry for the millennial-bashing! Bad girl! Hand-slap delivered.)

 Why must we continually tiptoe around people who made bad decisions and are not taking responsibility for them??!!

Sally Phillips is highlighting an issue which affects expectant parents all over the Western world. The medical establishment seems to have the idea that they should inform parents of all the risks in everything and downplay the highlights to avoid giving false hope, presumably to avoid being sued.

But this has gone too far, to the point where my husband was berated by a doctor well after Jacinta was born (this was a routine GP visit for his own health) for not terminating the pregnancy. This served absolutely no purpose other than allowing the doctor to voice his opinion and showed no agenda other than eugenics. The logic was 'she has Trisomy 21, why wasn't she aborted?', which is discrimination at best and eugenics if we're really confronting it. No-one was going to sue him for saying absolutely nothing and carrying on with his job of diagnosing and treating my husband.

It's no news that parents all over Australia are given a possible, probable or confirmed diagnosis and then pressured to terminate - often repeatedly and sometimes even very late into the pregnancy.
Parents trust their doctors, assume they would be told if there was more information to be had and consider the information they have been given very carefully and consulting their conscience.

The information given to expectant parents is often poor, outdated and negatively biased. It leads to very high termination percentages, at a time when Trisomy 21 has never looked so good. It is the aim of many parents both in the UK and Australia to get the right, unbiased information out there. I still say that a google of regretful parents with children with T21 brings up nothing but regret for termination and one newspaper article that I hope the child of that mother never reads.

Yet the advice given to pregnant parents is that the regret is on the keeping side and the relief is on the termination side. That's not how it looks on the internet. I know it's not how it looks on the keeping side. I don't know anyone who has terminated and commented about it, but the one comment I've seen was a character in Eddie Perfect's play The Beast, agonising over a decision made to terminate in the past.

 I chose not to have genetic testing with any of my children. I wouldn't kill a puppy so I wouldn't kill a foetus. That's my choice. I didn't want to have an agonising wait while I sat on a possible diagnosis for 6 months. Fear of the unknown is bad enough when you have nothing to worry about in pregnancy, let alone when you do. I was lucky to have a heads up a couple of weeks before, not enough to seriously worry about it but enough not to be completely shocked when Jacinta was born.

If I ever had another baby, I would probably choose the NIPS test. I feel informed enough now that the test would be useful information about what to expect, rather than worrying me about a big unknown.

I am informed. I would choose to give birth to another child with Trisomy 21 if another was conceived. This is not a religious decision, it's a rational decision based on my experience so far.
If up to 90% of parents are choosing to terminate I can only assume either that they are extremely selfish (preferring to kill a life form rather than be inconvenienced, as you would a fly) or grossly misinformed. I am pretty sure (in most cases) that it's the latter.

If these NIPS are to become the norm, then so must become being properly informed before you take the test - or at least upon a positive result. Then parents can be empowered, not kept in the dark. They can know that they will be terminating a life that chances are will be much more like your average Joe than not. It might not be as easy and there might be a few more sacrifices, but don't they say that life without pain has no meaning?

And we can't keep tiptoeing around those who have already chosen. We can make those advising them accountable and more responsible in the future for those who receive a diagnosis.

Personally I would love to see a positive diagnosis delivered by a person with Trisomy 21 who knows the stats and can candidly answer questions about their life. The world probably isn't ready for this, but I know there are people out there who are up to the task. Let them speak for themselves.

And let the parents fully understand, and make a real choice, one they can live with.