PM results - so confused

[tinkerbellesmuse]

DS was stillborn in August this year.

His difficulties were first diagnosed during my pregnancy as "severe heart abnormalities". A CVS later confirmed he had Trsiomy 21 (Down's Syndrome).

I had extensive scans, by some of the best consultants (3 in fact, not to mention 3 other more junior Drs) at top hospitals. I was scanned for hours - each organ measured and re measured each tiny detail recorded. Eventually we were told that he had numerous abnormalities of the heart, lungs, and kidneys and he had a echogenic bowel (which suggested his bowel and reproductive organs were missing).

DS died in utero and we gave consent for a PM. We had heard nothing and so today I emailed my consultant asking if the results were back. I was expecting her to say yes and that I could go and discuss them. She sent me a very kind email that included a synopsis of the PM.

He had Down's which of course we knew, but "the only abnormality on internal examination was a rotated bowel". His heart was perfect. Everything else was perfect.

I know it doesn't really matter. He died. I am just shocked. I wasn't expecting the detail today but I am shocked they were so wrong. They all seemed so sure so precise when I was scanned and I know this doesn't change the only thing that matters but how do I trust anoter scan ever again?!

God I feel shit!

I am so sorry that you have lost your lovely little boy.

I don't know how they could get it so wrong. Is it worth following this up with consultant?

I would mail her back and ask her how they can resolve the pm results with what they thought they were observing on the scans.

Ask her what they have learned form this and whether it will be fed back into training.

It is an awful thing to happen but at least hopefully people can learn from it to improve future technique.

I don't have the strength.

The horrible irony is that I was scanned at 9/11/15 and 17 weeks (not cos of any problems just the way things are done where I am) and no problem was ever picked up. When I had a scan at 19 weeks the radiology consultant was going balisitic that it hadn't been picked up earlier.

When I returned to UK the consulatants spoke along the line of "it is inconceivable that this wasn't picked up earlier"

I have spent the last couple of months thinking about whether I should make a complaint to the first hospital (we decided not to).

I have been angry at the first hospital and Dr for not picking up a problem that apparently didn't exist.

My head is a mess.

I guess the thing to remember is your baby died - not through mistakes but because he didn't grow properly. If you can come to terms with that then the rest doesn't touch you really anymore.

If you can mail back and say that you hope they can use this to help improve their scanning techniques.

You need to grieve for what might have been, readjust to your new normal and move on to the future. It is still raw - but it willget better.

Shocking that this was sent to you in an email!

Would it be possible for you to email back or call the secretary to make an appointment to discuss the results?

oh love, what a terrible situation to be in, i hope that you can speak to the consultant and get some peace on this. i know that when i lost (teeny wee, so not comparable) pregnancies, in a weird way feeling angry with the hospital for making an arse of some tests they ran and making a big emergency out of something that wasn't really, well, it kind of kept me going for a while, that energy.

Thanks everyone.

Ilovemydog I don't mind getting the email per se - just wish I'd known what was going to be in it - could have prepared myself or something. And I am sure the consultants intentions were kind, she just wanted to confirm what we already knew - that he died due to the Down's. We don't live in the UK so I am sure it was just a matter of not making us wait any longer for the info.

She has offered to see us any time we want and we will go and discuss the results with her at some point.

trockenholt You're right. I know it doesn't make a difference why he died and that is why we had decided not to complain about the first hospital. The outcome for him would have been the same regardless and I didn't want to get caught up in the anger and blame

but you are allowed to be angry, though, if you want to. as throckenholt says, it doesn't make any difference to the sad end result, but it is okay to be angry that you were put through so much trauma and that they told you that your perfect little baby with down's syndrome was much more injured than he was. and it will pass, as these things do, but you are allowed to feel it if you want to.

Oh TinkerB that's just totally crap for you guys, my heart goes out to you xx

I do understand the shock and disbelief you are experiencing as the day I got DS2's final PM results was absolutely awful. All I can suggest is writing down thoughts/questions you have in order to get them out and whether you discard them later or take them to a followup meeting. (alternatively a large glass of wine?!!)

Shock is a really strange emotion to cope with especially after such a long wait. I know it set me back quite a bit.

xx

Tinker, really feel for you, not been in the exact same place as you but ended up pretty damn near it.

I know exactly what you mean about not having the energy.

Take care

Tinkerbellesmuse, I have no words of wisdom for you with regards to the PM but simply couldn't read and not post.
My heart goes out to you, and the other ladies that have lost little ones.
Be kind to yourselves xxx

{{{tinkerbelle}}}

What a shock this must have been. You believe one thing for so long then that belief is turned on its head.

I can understand not having the energy, grieving in itself is exhausting, nevermind being up for a 'fight'.

Maybe make a list of questions/points now and pursue them at a later date?

xxx