Isn't She Talking Yet? - Times Online - WBLG

Another plea for positivity

This is from Heather Dodge, a reader. It touches on a post I made sometime last week, about being diagnosed during pregnancy and how to process the information that exists out there - if you read my post, you may remember that my main bit of advice was, try and resist the urge to go home and Google: talk to medical staff and other parents first - that way you may avoid hyperventilation, hysteria and sitting in the dark for hours, crying in front of the computer.

Heather puts it rather more clearly than I did. I think it's a really important point, and I wish some websites, which are otherwise perfectly friendly and informative, would take note. If you're a distressed pregnant woman wondering what to do, you don't necessarily want to navigate to a site where the first image you encounter is of an intubated (and the rest) child in intensive care; nor do you want to click on random innocuous-seeming links and be taken - without warning - to a gravestone. Here's her letter:

"I wanted to write to you regarding an issue which cannot be over stated. I am and always have been pro-choice and vigorously support every woman's right to decide whether to have a child or not; I am also the mother of a Turner's Syndrome child. As a responsible older mother with children born when  I was 36 and 39 I opted for the Neuchal Fold test to identify possible Down's Syndrome features. I did this with the full knowledge that I would
have to make the difficult decision as to whether to terminate or not as my husband was a devout Catholic who would have been unable to take the decision but would have backed my chosen course of action , whatever it may have been.

"I opted not to have amniocentesis due to the potential risk to
the foetus. I cannot tell you how grateful I am that I did not have this invasive test as the condition would have been diagnosed and , having read the websites on Turner's Syndrome, I know that I would have exercised that right of choice which would have deprived me of the most amazing, bright and
tough little character, otherwise known as Lara.

"She has been an absolute delight and is fortunately only mildly impacted by her condition, but when I read the information available on the web after her diagnosis I was absolutely heartbroken and pessimistic about the future. It was only the professor  and staff at Great Ormond Street who reassured me and enabled me to accentuate the positive and who provided fantastic support whilst they carried out the investigations to ascertain to what extent Lara was affected which gave me another way of looking at her situation.

"I would like to urge all websites detailing information on different conditions to ensure that they try to present a positive approach to diagnosis and emphasise where applicable the broad spectrum of potential symptoms. If I had had a diagnosis pre-birth and read the available
information I would have chosen not to have Lara and I and all those people who come into contact with her would  now be much poorer!

Information is powerful and those who provide it must be mindful of the potential consequences when they publish it-by whatever means."

Heather Dodge (privileged mother of Lara)

Pregnancy advice, of sorts

I’ve had a number of private emails from pregnant women whose babies have recently been diagnosed with a syndrome or disability of some kind. Needless to say, these women are in a blind panic. I can’t tell complete strangers whether or not they should have terminations, obviously, but I thought I’d try and write something that might be a tiny bit helpful to people in the same boat.

I was incredibly lucky with my last pregnancy, in that I had no idea at all that anything was wrong. I am thankful for this every day – it left me to enjoy the pregnancy (I love being pregnant – it’s pretty much my ideal state) without anything to worry about. I’d done it twice before, I wasn’t sick, the baby was growing beautifully – it was all lovely. Right at the end, my obstetrician mentioned that the bump was big for dates, and that I had rather a lot of amniotic fluid. I remember saying: ‘Couldn’t I just have a lot of amniotic fluid for no particular reason?’ She said that this was entirely possible, especially given that I’d been scanned and re-scanned – I was 38 at the time – and that everything seemed “normal”. There was no reason to worry.

Well, actually, had we but known it, there were not only reasons to worry, but reasons to panic too, plus – cherry on the cake – reasons to curl up in a ball and howl with terror. But those reasons didn’t emerge until Nell was two days old. I’ve written about her diagnoses and surgery before, and am not going to go through it all again (partly because I find it emotionally exhausting to revisit that period – it makes me feel slightly ill and disorientated).

Anyway: fast forward a few months. Nell has had her surgery, is home, and things are looking up. I’m making a cup of tea in the kitchen when I get a phone call from Nell’s doctor, who does a lot of in utero stuff (foetal cardiology, I mean). He says he’s just been with a patient whose unborn baby also has DiGeorge syndrome, and the same cardiac condition as Nell, truncus arteriosus. Would I maybe speak to her? She’s in a total state, considering a termination, and it might help to speak to someone who’s been there. I say yes, and he gives me her phone number.