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Early Nuchal Scanning - meeting with MW has made me v v cross....

16 replies

sarjon · 01/08/2005 22:00

Can someone help me out here with a bit of advice. I went to a meeting about Nuchal Early Scanning with my friend tonight (she is pregnant, I am not, just the 'taxi' for her!!) and was shocked at the way the mw spoke about babies with Down Syndrome.

I realise she has to remain impartial and I would never dream of judging someone if they chose to abort if they found out they were having a DS baby (its not my place to) but I couldn't believe how flippant she was being when discussing it all.

She even said at one point "we picked up DS in 13 ladies due to the Nuchal Scan last year, 3 ladies who chose not to have it had DS babies and had to take their babies home with them"

had to take their babies home with them?????!!! What did she expect them to do with them? I know that another friend of mine who had a DS baby a few years ago (who has sadly passed away now due to cardiac problems) had a really rough time with him but she always says he was an absolute gift to her and she cherishes the short time they had together.

Am I seriously over reacting here?

This wasn't the only thing she said, she was also talking about the risks of Edwards Syndrome and Patau Syndrome and said "I wont go on about these two as the risks are very low and you'll probably miscarry if you have a baby with Patau Syndrome anyway" and then carried on with another slide.

Please tell me this is just a one off and not all mw's are like this!?

I would really like to complain about her but its not my place to (btw my pregnant friend was equally as shocked as me). My mum suggested talking to the DS society to let them know what was being said.

What do you think, sorry for such a long rant....

OP posts:

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spacecadet · 01/08/2005 22:05

what an awful midwife! thankfully they are not all like that, when preg with dd2 i told the midwife i wanted no diagnostic testing apart from scans and she was fine, i told her i would never terminate a downs baby anyway. god im in shock, she has a very matter of fact way of talking about human lives.

WestCountryLass · 01/08/2005 22:10

I am SO angry! These 'syndromes' she is speaking of are potentially her clients babies!!!!

There is an organisation called ARC who support parents whose babys are found to have abnormalities and they also train and support midwives etc. I would hope if you contacted them and told them what was said then they would send further information and guidance/support.

Oh and I would complain for good measure, you may not be her patient but you still had to witness what she said!

sarjon · 01/08/2005 22:16

I'm glad I'm not the only one who thinks this. I just told my DH (who works with adults with SN) and he was distraught - his degree he finished a few years ago dealt with a few issues like this and he said that (at that time) the stats showed there was a higher risk of damaging your baby during an amniosentesis (no idea how to spell that!) than the actual risk of finding an 'abnormality'. Funnily enough she didn't mention that statistic, just that there were sometimes complications with amniosen... but the consultants dealing with them in this hospital had a very low statistics of anything going wrong. So that means they have had things go wrong then!!?!

I will look up ARC organisation, thank you for that. I was just worried that I was over reacting.

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Mirage · 01/08/2005 22:25

How awful!!!!!!!I would definately complain.Whether a baby has DS or not,it is still someones much wanted child.For all she knew,one of the people attending could already of had a DS child & that sort of comment would really upset them.

I'm so cross that I can't really say what I mean

spacecadet · 01/08/2005 22:27

no you are not overeacting-at all, i would contact arc and see what they say.

saadia · 01/08/2005 22:41

That's really terrible and unacceptable. Could you complain to the people who organised the meeting?

sarjon · 01/08/2005 22:42

Its funny you should say that Mirage, the friend I was there with has a 19 month old son with bilateral talipes (club feet). When she was told about this after her scan the dr's first comments were to tell her how long before she had to decide whether she wanted an abortion or not. She immediately said that she was having the baby, and needed no time to think about this and then the dr started to talk to her about how talipes would affect her ds's life. It all seemed a bit cock eyed to me - abortion options first and then discuss what her son would actually suffer?!

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sarjon · 01/08/2005 22:44

Sorry, pressed 'post' before finishing!!

My friend was obviously put out by what the mw was saying tonight as she has a gorgeous son at home with 'defects' (as the mw called them).

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eidsvold · 02/08/2005 02:11

I have a now 3 yo with down syndrome and am appalled at what was said to your friend. ( an aside dd's pic is [posted in the members profile) My dd also was born with a cardiac condition - hers was operable and she is doing sooo well. We knew before she was born that she would 99.999999% have ds due to her cardiac condition. You would be surprised the no of medical professionals upon meeting dd1 who ask me if I knew before she was born - obviously that would make a difference - I am then not someone to be pitied as I didn't know and had no choice but to take the baby home with me. WHen I was pregnant with dd2 had a GP ( in the UK) want to send me for every antenatal test under the sun including a fetal cardiac scan.

However - if it makes you feel slightly better here in Aus - have not had the question - did you know before dd1 was born, nor did the medical professionals push us for antenatal testing - now have a fab GP.

Two things you could do - write to the hospital itself expressing your dismay at the midwife's behaviour and then write a letter or contact the DSA ( down syndrome association) sharing your experience with them - you could also cc the letter you send to the hospital to the DSA. Even bolshier - write a letter to the ed in the local paper.......

saadia · 02/08/2005 08:27

I think sometimes people in the medical profession can be a bit detached. Slightly aside from the topic here, I know a married couple who are both doctors and when I wanted vbac for ds2 they were shocked and said that labour was just for animals.

Aragon · 02/08/2005 09:15

I think her comments were appalling. I used to be a midwife too and I can't imagine ever discussing babies in such a detached way. These are (as someone else said) potentially her clients babies.

She sounds quite schoolmarmish actually. Do as I say and have the test. If you don't then don't blame me when you have to take a child with DS home. I can almost imagine her tut-tutting and saying "I told you so" if the test was declined and the baby subsequently turned out to have Downs.

I hope this was just a one-off and that you got her either on a bad night or totally unprepared - (maternity units are notorious for saying "oh you go and do that talk" to a midwife when they are short staffed).

Aragon · 02/08/2005 09:16

And these screening tests are not the be all and end all. They do give false negatives too.

sarjon · 02/08/2005 20:16

Thank you for all your comments, I'm pleased to hear that this sounds like a one off. I'm going to try and get hold of the ARC organisation on my day off on thursday and hopefully they can give me a bit of feed back as to where to take it from here.

Eidsvold, I'm really pleased to hear that you have had a much more positive reaction in Oz, I imagine having a fantastic and understanding GP makes your life just a little bit easier.

I got the feeling that maybe there is a government campaign on early scanning and that she has certain targets to meet. Although I don't really think targets should get in the way of human empathy and I think she was just a mw with poor lecturing skills.

I'll keep you updated as to how I get on!

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Jimjams · 02/08/2005 20:29

sarjon - your friend was offered a termination for talipes????????? wtf?

MW sounds terrible. My eldest son is severely disabled and I would have lost the plot if she'd said something like that to me.

sarjon · 02/08/2005 20:48

I know - amazing isn't it! The thought that my friends gorgeous son (my godson) wouldn't be here if she had been swayed by the consultant just doesn't bare thinking about.

I totally understand that people have the right to chose and its noone elses decision but I also think that people should be armed with all the information possible so they can make an informed choice.

It would have appeased me more if there had been offered the opportunity for a talk with the DS society or even just a leaflet outlining the real facts about DS after this talk by the midwife.

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eidsvold · 02/08/2005 23:22

sarjon - the local hospitals around where I used to live do have parent packs for parents who are given an ante or post natal diagnosis of down syndrome.... but I don't think there is a lot out there in general unless you go looking for it. Your friend can check out the DSA website for more info.

here

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