Consultant Appointment after Termination... any questions you would ask?

[marj1]

It's great to have our own little area where we can post. Thanks to all for setting up.

I've previously posted on the main pregnancy page. I had a termination on 23 March at 18+5 for downs. I also potentially miscarried back in 2006 with a downs child so lightening has definantely struck once and maybe struck me twice.

I got a letter from hospital this morning saying my appointment with consultant to discuss things is scheduled for 5 May. I have a number of questions already in my mind I want to ask but can anyone suggest any I should ask, if they have been in my situation?

Thanks, Marj1

Hi Marj,
From what I understand (and you'd have to check this) there are different types of Downs Syndrome, and only one type is genetic, and the rest occur when the pregnancy begins. Hence, only a tiny percentage of parents ever have two Downs babies. So, you and your partner could be screened to see if there is a problem. Also did your little boy have a post mortem? Did you have any tests after your miscarriage? Is there something they said that makes you think the first baby had Downs?
If it turns out that there is a genetic problem, and they think you have a high risk of having another downs baby, you could see if they would offer you PGD (Preimplantation genetic diagnosis), with IVF.
If all is well with your tests, I think the only thing you can do is to try to conceive again, and wait and hope.
If you are keen to try again, I think there is no medical reason to wait. I was recommended to wait until after my first period, because then you know that everything is working again and it makes dating it all a bit easier. So, I am currently waiting for my body to be ready!
Mentally, is a different story. You may find you just don't feel ready yet. Your consultant might be able to recommend particular counselling that would help.
If I think of anything else, I'll let you know. Good luck.
p.s How are you doing now? xxx

Hi Lins,

Thanks for your comments, I will incorporate them into my questions.

We didn't have a post mortem for Joseph. I really wanted one but DH didn't so I had to take into account his feelings. I had agreed with the hospital to send my placenta away as they can tell more from that but I bled very heavily and most of the placenta ended up on the hospital floor and they threw it away without even discussing with me. The nurse at the hospital did say that the amnio was conclusive and didn't know why I wanted more tests, not much I can do now though.

When I had my original miscarriage, I had been bleeding and gone for a scan at 11 weeks. It was then they measured the fluid round the babies neck and said it would have chromosone abnormalities, more likely to be downs and I would miscarry, which I did. As I was only 11 weeks at the time they didn't offer any further tests and so now have no way of knowing for sure about that pregnancy. My age is against me as I'm 40 in November.

I'm not sure if they will offer genetic testing, something I'll ask in May. I do have a healthy DD (8 in July). One thing I have been wondering, is whether my miscarriage was a boy and maybe the extra chromosone appears when I conceive boys. Any thoughts on this?

I'm not too bad at the moment, the posts from you and busier and others have really helped me feel not so alone. Waiting to hear when Joeseph's cremation will be. Going back to work on Monday. Had 2 weeks off with termination and then next 2 weeks off with Easter as I only work term-time only. It will be nice in some ways to get back to work but in other ways I know it will be difficult as people will be asking me how I am and I'm bound to break down. All part of the healing process I suppose.

How are you today?

Marj1xxx

I'm back to work Monday too....think it will sort of be ok.

I think if you explain clearly to your consultant about your worries about having possibly had two downs babies, they should refer you for genetic counselling and maybe they can tell from testing you and your husband. Busier might know more about this.

I don't know about the situation regarding boys, but i'm sure someone else will be able to help.

Let us know when you get a date for Joseph's service. xx

Hello Marj
So glad you sounding less fraught my dear.
I am going to tell you my experience of the testing and see if it helps.
With the second baby -the termination was 2 weeks ago yesterday - the consultant told me after the CVS results came back that the baby definitely had a whole extra chromosome 21. This means that it was not translocation Downs Syndrome. It means that as far as they are concerned I am no more at risk of having another pregnancy with DS than anyone else. Although having said that if you have had one DS preg then your chances of another just do go up even though it is not considered genetic. I do not quite understand this and spent hours trying to get my head around it. I gave up in the end.
Translocation DS is when one parent has an extra bit of Chromosome 21 but they are balanced as all the chromosome 21s have same extra bit. When the carrier parents genes and non carrier parent genes fuse the baby is then unbalanced. This is rare. One percent of children with DS have this. I think this is right but could be slightly wrong as am writing from memory.
When I had my second baby they took bloods from me and my partner so when we have our meeting in a few weeks they will have this information.
Having said all this, A woman on my thread had two consecutive DS pregnancies and a DS miscarriage and so has a woman on ARC had two. There is a chance and my cons agrees that for some couples there is a gene for Trisomy 21 that has not been identified yet.
So... I would get information on your type and have bloods done. PGD is an option - not sure how successful and not sure where or how much.
The feeling seems to me to be for myself and partner to wait a few months for some emotional recovery as already have two due dates ahead of me whilst also seeking advice from geneticist.
I also am a term time worker - think i can guess your profession!
But have booked myself another week off.
I am glad you feel more peaceful Marj and do keep in touch - here or on my new thread which I think I forgot to title in my worry about putting the correct title. Maybe that is best
BBxx

Also Marj really do not think it is gender related I have to say. The age thing is huge. I have a terrible confession to make. When I started on mn I put 42 because I was so worried that someone would guess who I was - friends I suppose. Stupidly I am 41! Yet all other details- children, life everything is correct so have no idea why I thought that would hide my true identity!
What a nutcase and it has been worrying me ever since. I am such an honest person.
So there you go - my true confession.
41, 42, 40 I know it makes a difference but really slight at this stage.
Golly good luck to you next week
Hugs
BBxx

BB, lying about your age is normal for a woman - but to make yourself older!!? That's funny. xx

I found this link (while trawling the internet for reasons why) not sure if any of you have seen it, but it gives information on Down's syndrome in regular language. Hope it helps

www.intellectualdisability.info/diagnosis/genetics_ds.htm

Bezzy

Busier,

Thanks for your post and telling me of your experience.

When DH and myself met with one consultant at our local hospital to discuss termination he actually said to me that as we've had one DS pregnancy the chances of having another one are much higher. Something else I'll have to ask about.

If it is genetic why didn't it affect our first DD. So many questions. Need to spend a lot of time sitting down and putting them all down, otherwise I'll get to the appointment and forget everything.

Bezzyk - thanks for the link, I will take a close look at this when I have some quiet time.

The difficult question for us is do we try again? I would dearly love another child but I don't know whether I'm strong enough to go through this horrendous experience again.

Marj1xxx

But my dear you are not strong enough now - of course you are not. Nor me. From what I understand the risk goes up after one DS baby regardless of whether it is translocation or not, but not hugely. For example for me aged 41, the risk would have been 1 in 50 ish and then once they knew I had a previous DS baby it went up to 1 in 43, which sounded okay to me. Until it happened again.
Now that I am less raw and soaked in sorrow - I have a more fighting spirit - I will have a baby for him. We will share parenting together. I will not be defeated but am very scared of going to the geneticist.
We will keep each other going and we will share information and fears.
Will read you tomorrow on ARC. Get the hankies out.
BB xxx

has anyone had any experience of an amnio result being wrong. I'm haunted day and night by the fact mine could be wrong and I terminated Joseph. It's a horrible feeling.

I did ask the Consultant do they ever make mistakes and he said no but I can't get it out of my head.

Marj1x

The amnio result is nearly 100%. If there was any doubt they would have re tested. I have found the following link with regards to amnios www.mums.me.uk/Amniocentesis.htm
I had a termination for downs which was confirmed by CVS. I think it is part of the grieving process thinking that the results were incorrect as I had the same thoughts after my termination.
I hope that this helps.

Hello Yaya mum
I have to agree with you - I have had two cvs and two downs pregnancies and the consultant reassured me that they run the tests twice or however many times until they are sure. But of course one is haunted by it.
I think you are right - there are so many emotions to be got through and is good you are talking so keep asking those sort of questions even if they seem daft.
Night
BB

After my termination for downs I was told by a genetic nurse specialist that my risk of having another downs baby has increased by 1%. She said this is because 'they have to put some sort of figure on it' - but in reality it is probably less than this.

I thought - oh well, that clears that up then doesn't it. Not!

I too am agonising over this - if its genetic why didn't it affect my DD?

Hideous time - thinking of you.