Blood results in.*Letter From Hosp Added*

[Cattia]

That is odd as mine had a piece of paper attached to the back of it that gave the figures, but maybe they don't do this if you are high risk as they want to talk to you? Good luck at the hospital. It would be a good idea to ask them lots of questions about the risk, because even though you have already made your decision about what you want, it's still good to know what you are dealing with. Fingers crossed for you!

 

[elainegee]

dont let them rpessure you into anything, i chose not to have any blood tests and felt like i was being frowned upon.

The only good bit of advice is i work in a GP surgery and have seen many woman get this kind of letter back and in my 9 years of working there not one of them has actually had a baby with downs or had to 'terminate' x

 

[QTPie]

Hi Jelly_Tot

Looking at your letter, the important thing to understand from it is that the appointment is optional

You can choose to attend it or you can choose not to attent it: it is completely up to you.

IF you attend it, be prepared to be offered options that you are not comfortable with. Please do not get angry for the poor person putting the options forward to you - it is just their job.

Have a proper discussion with your OH BEFORE going to this meeting: ensure that you both do want to go to the meeting (you should certainly not go alone) - you do not have to go at all.

MWs can be very "hap-hazard" (not always due to skill or knowledge, just often because they are too stretched to give every patient the time and consideration that they need)... to be perfectly honest, I think that we (pregnant women) need to be "ahead of the game" with all things pregnancy: read everything you can, gather your own knowledge, be able to make informed decisions and take control of your pregnancy. It is what keeps me sane, to be honest. I think that MWs make quite a lot of assumptions and those assumptions may not be right for you or for me... so try to always put yourself in a position to question every step of the way - this is your pregnancy and not your MW's

If you completely honestly do not care if you have a Downs' baby (which it sounds as though you are adamamant that you are), then personally i would not attend the meeting (especially if you feel that it will upset you).

Good luck

QT

Your blood screening result for AFP/HGC (downs syndrome screening) has come back showing a higher than average risk result. To save you unnecessary worry, we would like to point out that a result in the increased risk group frequently occurs in completely normal pregnancies. We would however like to invite you to discuss your result and options with one of the midwife councellors.

An appointment has been made for you to attend the department of obstetric ultrasound on level 7 at ninewells hospital on tuesday 25th august2009 at 10:10am.

 

[ellie27]

Your letter was pretty much same as mine then, Jelly Tot.

Mine did not have my actual figure, just said high risk, and so was left like you after getting letter through on the friday to have it going through my head all weekend til the appointment on the monday. Your actual result will be the first thing they tell you at your appointment - and I hope its as good as ours!

As I said in my earlier reply, I had the tests too, even though I might have not done anything about the outcome, I still wanted to know the risk. If I did not have the blood test done I would be thinking 'what if...maybe I should have....' except now I know my result (turned out 1:249) I am not worrying at all.

Even though you have pretty much decided you are not going to go ahead with the amnio, you might want to know your actual figure eg 1:3 or 1:200 - and whatever the result is, it might be a weight off your shoulder or if not, at least you will be somehow prepared for what might happen?

 

[cupcake]

we turned down the amnio- I was very far along and didnt want to risk going into labor..

 

[KaeRit21]

i had the blood tests too, and although both mines came back negative, they told me that if they had to come back high then amnio wasnt my only option, they would scan me too.

it wouldnt have made any difference to me either and i told the midwife that, although she looked at me like i had two heads.
just remember the decision to go is entirely yours

xxx

 

[Jox]

i had my blood taken on friday for downs risk. we have already told MW that we are not interested in having any other tests done regardless of the results. it wont make any difference to us what so ever!!! our baby is our baby whether there are problems/complictions or not. We made baby and want to take care of and love him/her regardless.

Just our opinion

xxx

 

[leelee]

We had the nuchal test and where I am living we weren't given the option of not having it, although I am sure we could have requested not to have it.

We were lucky and got good results but we had already decided not to go for an amnio or CVS even if the results were high risk.

I think it's unfair to tell JellyTot that she shouldn't have had the blood tests in the first place. She has already said that she wanted to find out if she is high/low risk. I was the exact same and wanted to be prepared somewhat, although not have the invasive tests. Everyone is different and also what we want is different to other people.

Jellytot - if I were you I would not attend the meeting if it is going to upset you. You can always ring tomorrow and get the results.

 

[callmepoppy]

Some women do decide to have the amnio just to be prepared for when the baby comes in the event that the child does have downs syndrome... but still keep in mind the risk is still really low so its totally upto you if you want to know.

Just do what you feel is right and what your comfortable with

take care x

 

[Rhiannon]

Baby is over average of risk for down syndrom so have too go in for a chat on tuesday about our "options" but i don't care if the baby does have ds it wont make me love it any less! why cant people bloody understand that!!

I dont want the god damn amnio test because of the risks i know its low risks but any risk is too high for me! anyway getting that done wont change it if the baby does have ds

At my booking in appointment i told the mw if it came back high risk i dont want the test and she was like yeah but you should cause if it comes back baby does have it you can get a termination WTF?!?!?!?!?!!??!

Seriously, its not the babys fault if its a bit diffrent and when i told her this and said i wouldnt get rid and it wouldnt make a difference she was like yeah well..

so i dunno what is gonna happen on tuesday but they better not fucking piss me off or ill be walking out of there no one but noone is gonna sit and tell me it might be best to get a termination or how i wont love my baby as much!

Letter from hospital as a few people are asking why it doesnt have the risk number level on it...

LETTER FROM HOSPITAL​

Your blood screening result for AFP/HGC (downs syndrome screening) has come back showing a higher than average risk result. To save you unnecessary worry, we would like to point out that a result in the increased risk group frequently occurs in completely normal pregnancies. We would however like to invite you to discuss your result and options with one of the midwife councellors.

An appointment has been made for you to attend the department of obstetric ultrasound on level 7 at ninewells hospital on tuesday 25th august2009 at 10:10am.

This appointment will allow time for a discussion with a midwife councellor, a scan of your baby and an amniocentesis if you should request this.

If this appointment is not suitable, please contact one of the midwife councellors and a more convenient time will be arranged.

Yours sincerely

Lesley a mays.

hi hun hope you dont mind me replying a personal experience reply..

i had a telephone call at just over 15 weeks from a midwife telling me that our baby was very high risk for downs (1 in 35). i wasnt "offered" an amnio...i was "told" an appointment had been booked for me to have an amnio. that really upset and annoyed me because like you i decided that regardless of result we would love the baby just the same. i felt forced into the amnio. i didnt have one mind, i rung up and said "no thank you".

i requested a chat about the possibilities, but stressed i only wanted it for preperation reasons as opposed to reasons for termination. i havent had an appointmnet booked for me yet, still waiting

for some reasons people dont want to think of the chance of you not having a baby with ds - only the chance of you having one.

i seem to get the feeling that nobody is interested in me and my babe since we declinded the amnio. maybe not a fair judgement, but its the message im getting.

as its my first pregnancy which has gotten to the point of scans etc, i thought that having a nt scan with bloods was something that should be done. i wont be having it the next time.

if you want a chat then just message me

xxxx

 

[AlwaysPraying]

This appointment will allow time for a discussion with a midwife councellor, a scan of your baby and an amniocentesis if you should request this.

I think this line is very important. You can go in and find out what your actual risk # is, which could be very helpful in your next step. It sounds to me like they have literally scheduled enough time for a talk, a scan and an amnio. You don't have to have any of those, but you can if you choose. It would be hard going forward knowing that your at high risk, or some version of that. Wouldn't it be better to know if it's very high or slightly high?

Also, on the side of the amnio, I think it's a valid point to stop and really think about. IF the amnio comes back positive for down syndrome, you will have so much more information to go forward with. This does not mean that you have to terminate or anything like that. Knowledge can be very powerful in an instance like this. The end of the line is delivery and at that point the "test" will be done. You will know at that moment if the baby has down syndrome or not. So, now or later, you will find out the answer. Not finding out now is only delaying finding out until later. FOR ME, we wanted to know sooner than later what we were dealing with, our results had many issues in them that could necessitate surgeries IF certain things were happening. We had to know if we qualified for surgery so we had to get the amnio (we had a cvs, same as amnio, just done earlier in pg).

Not that you asked, but my opinion would be to go and talk to your midwife (Honestly, you'll get these results next time you go in anyways I'm sure, they'll be on your records). Find out what your real risk number is, then do the scan! What can it hurt?! A free scan to double check the findings, a scan to just look and see if what they saw earlier confirms or denies anything. THEN if appropriate, talk about the amnio. Don't even think about termination at this point, it's not an option for you, but that doesn't mean you can't find out what your dealing with.

I hope I'm being clear, I know I'm not with the norm and I'm talking from an emotional position, but for me, knowledge is power and a scan can't hurt, why delay the results when you'll get them eventually anyways. Good luck!

 

[BBonBoard]

good luck, i hope your little one will be ok.

 

[_Vicky_]

That is odd as mine had a piece of paper attached to the back of it that gave the figures, but maybe they don't do this if you are high risk as they want to talk to you? Good luck at the hospital. It would be a good idea to ask them lots of questions about the risk, because even though you have already made your decision about what you want, it's still good to know what you are dealing with. Fingers crossed for you!

I only got 'you are low risk' in my letter too - I only knew my actual numbers as I phoned and asked. I guess they all do things differently x

 

[Jelly_Tot]

Your letter was pretty much same as mine then, Jelly Tot.

Mine did not have my actual figure, just said high risk, and so was left like you after getting letter through on the friday to have it going through my head all weekend til the appointment on the monday. Your actual result will be the first thing they tell you at your appointment - and I hope its as good as ours!

As I said in my earlier reply, I had the tests too, even though I might have not done anything about the outcome, I still wanted to know the risk. If I did not have the blood test done I would be thinking 'what if...maybe I should have....' except now I know my result (turned out 1:249) I am not worrying at all.

Even though you have pretty much decided you are not going to go ahead with the amnio, you might want to know your actual figure eg 1:3 or 1:200 - and whatever the result is, it might be a weight off your shoulder or if not, at least you will be somehow prepared for what might happen?

Your right on the dot there, alot of people are saying to me well why did you bother having the blood test done if you don't care but like you i wanted too know my chances so that i can atleast be a bit prepared that there could be a big risk of baba having it or if its a low risk like you said.

Thanks for actually understanding fully why we done the blood test but dont want any further tests but do want to go to the appointment to find out the chances xx

 

[Jelly_Tot]

This appointment will allow time for a discussion with a midwife councellor, a scan of your baby and an amniocentesis if you should request this.

I think this line is very important. You can go in and find out what your actual risk # is, which could be very helpful in your next step. It sounds to me like they have literally scheduled enough time for a talk, a scan and an amnio. You don't have to have any of those, but you can if you choose. It would be hard going forward knowing that your at high risk, or some version of that. Wouldn't it be better to know if it's very high or slightly high?

Also, on the side of the amnio, I think it's a valid point to stop and really think about. IF the amnio comes back positive for down syndrome, you will have so much more information to go forward with. This does not mean that you have to terminate or anything like that. Knowledge can be very powerful in an instance like this. The end of the line is delivery and at that point the "test" will be done. You will know at that moment if the baby has down syndrome or not. So, now or later, you will find out the answer. Not finding out now is only delaying finding out until later. FOR ME, we wanted to know sooner than later what we were dealing with, our results had many issues in them that could necessitate surgeries IF certain things were happening. We had to know if we qualified for surgery so we had to get the amnio (we had a cvs, same as amnio, just done earlier in pg).

Not that you asked, but my opinion would be to go and talk to your midwife (Honestly, you'll get these results next time you go in anyways I'm sure, they'll be on your records). Find out what your real risk number is, then do the scan! What can it hurt?! A free scan to double check the findings, a scan to just look and see if what they saw earlier confirms or denies anything. THEN if appropriate, talk about the amnio. Don't even think about termination at this point, it's not an option for you, but that doesn't mean you can't find out what your dealing with.

I hope I'm being clear, I know I'm not with the norm and I'm talking from an emotional position, but for me, knowledge is power and a scan can't hurt, why delay the results when you'll get them eventually anyways. Good luck!

I do plan to go to this meeting to find out what my actual risk number is as i would like too know as you said if its really high risk or just high risk. As for the scan yeah i am willing to have that done but i shall not under any circumstances be having an amnio, the risks are too high and i already have a history of 5 miscarriages i do not want too make it 6 xx

 

[nervouspains]

Hi Jelly tot, If there was something 'wrong' with your baby they would have noticed at your 12 week scan.
The blood results is just to give you an 'estimated' result.

My first pregnancy, I had a downs baby, a little girl, her fluid was 7.30 at the 12 week scan, I didnt even have blood tests, I had a CVS and was then told my baby had downs, and a large heart defect which was visable so early on in to the pregnancy, they told me I had a 5-10% of carrying to term, and even if I did, she wouldnt have lived very long as her little body wouldnt of been able to cope with the pain, so we made the painful descion to end our pregnancy.
I cannot tell you the pain this causes.

Now I am pregnant again, I have been given a 1 in 300 result of having another downs baby, this is from my past history rather then my blood results.
I have been offered the amnio, but I am not chancing the risk of 1 in 100 chance of MC compared to the 1 in 300 chance of my baby having downs.
So we are opting to have a more detailed 20 week scan, I trust in my mind and body and know that I am carrying a healthy baby, where as I knew with Angel something wasnt right, I guess a mothers instinct/ gut feelings, are usually right.

Personally, If I was in your position (What risk have you been given? They now consider anything over 1 in 150 is a low risk) I dont think I would risk the amino with the high risk of MC that it carrys, and if anything was wrong theres a 95% chance it would have been picked up at your 12 week scan.

I wish you all the best, and you do whats right for you, not what others or the doctors say

xxx

 

[spritey]

Your health care givers lack bedside manners for sure.

However, you may want to consider the test even if you don't expect to terminate. It will give you time to prepare for a special needs child, including preparing your other children, if you have any, for this. You don't want to start reading up on his/her needs after birth, when you're sleep deprived as it is and already have to give care. If the disability is very serious, such as one of the poster's children here had, and the baby is not expected to live, you can also prepare yourself/your children better.

Also, the posters here overstate the risk with amnio. I was quoted 1/370 risk of miscarriage by the genetic counselor and many doctors, who do this all the time, have a much lower risk. I chose to have CVS (1/320 risk) and was happy with my decision. We, of course, had absolutely decided to terminate in case of downs/chrom disorder, so it was important for me to know as soon as possible (I had no screening tests, just CVS b/c of my age). Of course, for some of you even that risk can be too big, and I understand it.

 

[geekone]

Hi

I am not too far from you in Cupar, can I ask who your midwife is? Sorry I am goign to Forth Park I had the choice but FP won and I was just wondering if you new you midwifes name.

Anyway the other reason I am replying is because you dont need to go tomorrow. If you dont want the amnio and you would never terminate you dont need to talk to someone about it, how is that going to help. Just call them and cancel.



I had my test last monday so I have this week of worry but to be honest I am like you I wouldnt have the amnio and I couldnt terminate either!