follow up appt with consultant -what to ask

[poppy34]

I've got my follow up appointment where we get results of post mortem (see earlier thread- we lost our baby about 5 weeks ago due to various abnormalties). Can anyone help with suggestons of questions to ask/etc? Apart from being walked through the post mortem and asking the obvious (is it something that can recur again? Do we need to do any further testing?)

Also on trying again (barring) -any suggested questions? Just tryign to be really organised now and get my thoughts together . WAnted to ask others as bound to forget something and this site has been a lifesaver through all this for support.

hi poppy!

I don't know tbh but would suggest that you write any questions down - just so you can glance at the list at the end to see if there's somethign that hasn't been covered (also it takes the pressure off you to remember everything!).

I hope you are doing ok - is dh/dp coming with you to the appointment?

thats what my plan was (and yes dh is coming too - apart from anything else I tend to forget half the things I get told).

Feeling lot better (think counselling has helped) - not even feeling apprehensive about going into hospital for appt which is stepforward as after all the stuff that had happened had gone right off doctors/hospitals etc.

oh that's good news - I'm glad the counselling helped.

If you don't get any useful replies tonight, bump this thread tomorrow during the day. I'm sure someone will be able to help you with questions etc.

good idea - there is usually someone with a different angle on things so really wanted to get some views.

Fiofio good idea to ask but presumably that is going to be obvious from post mortem results but will ask anyway.

although why I'm saying that - one thing I've learned is not to hold back askaing questions or for help

Hey Poppy

Good luck with your appt, really hope it all goes well and will be thinking of you.

Re trying again, one thing that came up a bit later for me was the (slight TMI alert..) quality of my womb lining. One doctor said that there was no medical reason not to try again asap, but another said you should wait for a few cycles in order for the lining to renew itself. Still not really sure if there's anything in it, but it might be worth asking if thats something you should be thinking about...

What was also really useful for us was to have a % chance of it happening again, so at least you have some measure of risk

Again, hope it all goes well as it can

Agree that an area of useful discussion is what, if anything, you and they can do to give you the best shot at a healthy pregnancy next time poppy.
I wanted chapter and verse on the screenings they did for me (comprehensive because we didn't know what killed our ds and the post mortem was inconclusive).
With hindsight I am not ashamed to say I "used" the meeting to double-check my Strep B, cytomegalovirus, listeriosis and toxoplasmosis status, double check they had screened me fully for antiphospholipid syndrome, and as LondonBird says, it is very useful to know whatever they can tell you about your own reproductive health.
I also asked what additional support the hospital would have in place for couples expecting another baby after a stillbirth. I sort of knew it would be good, as we were treated so well, but I wanted it on record that we would get whatever extra TLC we might need.
This won't apply to you IIRC but I found it so hard not knowing why our baby died and to this day it's the hardest thing to come to terms with.
I wish you a really good, informative and compassionate appointment next week XXX

thoughts to you poppy xxx

just to say what the others suggested - write down questions & also answers if poss.

ask if you can call if you have any questions afterwards.

And get them to double-check your immunity to slapped cheek (Fifth Disease/Parvo) and rubella too - can be done from bloods and may already have been

thanks all -this is all really useful. Marina -think they've told me that rubella, antiphospholid etc all clear but will ask again to write it down.

good idea - re asking on support next time. I've been told that I'll get it (and given how good the hospital were in teh worst of circumstances I've no hang up in going in what I would hope are better circumstances) but I would like to know what I can expect/ask for.

Goign to write this all up and go through the list like the sad person that I am.

thanks again for your help/thoughts xx

It's not sad at all poppy. I had a long list when I went into my meeting, not because I was anticipating being fobbed off or rushed but because it's entirely understandable to be disconcerted enough by the whole thing to forget half your questions.
I even had two lists - one with my questions couched in very neutral terms (so I could hand it over if requested) and another, with my notes and thoughts on what answers I was hoping to hear - definitely not for consultant consumption, it was a very angry piece of paper.
With regard to APL, I'm not sure this is relevant to you, but I was told by someone that standard NHS APL screening covers only some of the APL syndromes (there is more than one). Tbh APL normally results in a first trimester loss but if you and your consultant think there is any mileage in this double check the screening you had was for all APL variants.
I had the information volunteered to me thanks to my bereavement midwife, but you might also want to ask if the hospital uses the special SANDS stickers on your notes file. This alerts any health professional involved in your aftercare that you have experienced a stillbirth and it should save you ever having to spell it out.
Wishing you lots of luck with the meeting. For some reason I have a feeling you are local to me (a post somewhere about SE London...?) - my experiences all relate to QEH in Woolwich and they were very good to me there on the whole.

Hi Poppy ? another thing that you might want to get them to check for (v.v.rare so not done routinely) is Granulocyte Specific Antibodies HNA-1b.
This is a very rare condition that means your antibodies can cross the placenta killing the baby?s antibodies.
When I lost my first born son at 33wks gest the PM came back with no abnormalities detected.
It wasn?t until I had my second baby (34wks) that, during some testing, it was discovered that I have this condition and in hindsight the consultant now thinks that this may have been a factor in the death of my first baby?un proven as no/not enough tissue was retained to test.

Marina (and others) ? Dailiaa said something on another thread I saw a few days ago about her midwife telling her that years ago they called stillborn babies pioneer babies that are with you for a short time to ensure the safe passage of future babies. I thought that was a lovely way to think of my first baby.

Good luck poppy.
xx

antiphospholipid notoriously difficult to detect (friend had test 5 times before it turned up positive) so do persist with that avenue