termination following trisomy 18 or 13 diagnosis

[ona]

I am 33 years old. I have a beautiful, healthy baby girl aged 15 months and I consider myself very lucky. However, subsequent pregnancies have not been so easy. My second pregnancy miscarried at 7 weeks and my third pregnancy was terminated at 13 weeks because the baby had trisomy 18(Edwards syndrome.) I would love to talk to other mothers who have been through something similiar. I suppose I'd like to hear about how others have coped with a termination and subsequent pregnancies following a termination. At the moment I'm thinking about genetic counselling for myself and my husband. Necessary or not? I'm undecided.

Hi Ona, I have never terminated any of my three pregnancies. My youngest 20 mo was diagnosed with a choroid plexus cyst in the head at about 16-20 weeks I cant remember the exact time. That was the biggest scare of my life. My doctor did counsel me on the Trisomy 18 and 13 and said I could have an amnio test done to check for this. I was very concerned about miscarrying so I decided not too. I decided too just let things be and pray for the best. My doc said the chances were small that there would be anything wrong. He based this on the number of patients he had over the years with this type of situation. This did not keep me from crying and worrying everyday up until the very end. I honestly did not have any clue if my baby would be born with any problems I could only hope and pray. Although I have never had to terminate a preganacy or either miscarried I know its a hard thing to deal with. I dont know much about genetic counseling but would the genetic counseling tell you in advance if another child could have trisomy 18? If it could I would want to have it done. It must to have been so hard to lose a baby and have to terminate one also. I wish you all the best on your future pregnacies.

At our hospital couples are automatically referred for genetic counselling which gives you the opportunity to discuss the likelyhood of the condition recurring. It would probably be really beneficial for you. God luck.

I'm sorry to hear of your problems, Ona. Have you contacted the NCT to see if they could put you in touch with someone who's been through the same thing? They hold an Experiences Reister for things such as this. There is also a support group for people who have terminated a pregnancy through problems. It used to be called SAFTA - maybe a search on the internet would bring them up? Best wishes.

SAFTA are known as ARC now. This website might be helpful

this

Ona - if you click on this on the previous posting you should be taken directly to the site.

Thanks, everyone. Those contacts look helpful.

Would you say a prayer for us, three angels.

Dear Ona, I will certainly pray for you and God Bless.

Hi Ona. I posted on another thread about the termination I had in November. You don't say when your last pregnancy was, but presumably pretty recently from the age of your daughter. How are you feeling? No, I really mean it! (Amazing how much you feel the need to say "fine".) A few things I would say: 33 is not old. Also both your miscarriage and conceiving a baby with Trisomy 18, are probably, sad to say, just one of those things. I guess what I'm trying to say is that there's no reason to think that you shouldn't be able to carry a baby to term without any problems. Have you talked to your GP or midwife about genetic counselling? We were told that we'd have the opportunity to have early scans/CVS/amnio etc. in a subsequent pregnancy, but I think this is more to do with putting our minds at rest than because they think there will be any problems.

I'll send my address to mumsnet to pass on to you if you want to chat some more offline. I spoke to a couple of mumsnetters after I had my daughter, and it really helped to know that people understood what I was going through. Lots of love, R.

I've just read your thread Rosy about your own loss. What an agonising time that must have been, I am so sorry that you had to go through that.

I am feeling better about my own termination - sort off - sometimes find myself blubbing about it when asked, though. Not surprising really as it happened two weeks ago so emotions still pretty raw. And hormones all over the place I should think.

My GP does seem to think that it might be helpful to talk to a genetic counsellor, and i hope, as you have done, he'll say it is just one of those things but am terrified he'll take blood tests and tell me there's a recessive gene there or something. My fear at the moment though I think, from what I learnt, very unlikely.

How are you doing now?

Hi, Ona and Rosy (I have just read your story), much sympathy, I also have been through something similar,

My first pregnancy with IVF was twins of which one miscarried at 7 weeks, did have healthy (but prem baby following on)

My second pregnancy was also twins after IVF and sadly one was diagnosed with Downs at 13/14 weeks, it was a heartbreaking decision having gone through IVF to then terminate but we were advised that the risk of miscarriage to both babies was high and I could not face the stress of the rest of the pregnancy worrying that might happen.

Fortunatly, the rest of the pregnancy went well though I was v emotional and the joy of dd arrival was tempered by the fact that there was only one baby and not two.

It was a v difficult time though I have mostly come to terms with it now (still feel sad when I see new twins) We have discussed having another baby but I am still not sure yet if I could go through the stresses again and worrying if all would be ok,

Thinking of you at this time, I can understand something of what you are going through, let us know what you decide and if you (or Rosy) want to talk more offline the moderators can pass on my details to you.

How are you now Rosy?
love, mindy

Hi Mindy & Ona. If it doesn't sound too patronising Ona, I suspected that your first post might have been a bit unnaturally cheerful. You must be going through a terrible time of it at the moment. My own emotional stages went a bit like this. First couple of weeks: very emotional, but felt very close to my husband, was in wonderment at my elder daughter, and was generally fussed over by health professionals. Over the next couple of months I struggled on, hoping things would get better. Then I cracked at about 3 months after the birth, and went to a counsellor at the hospital a couple of times, which made me feel alot better. I was depressed in all the normal ways - couldn't get motivated to do anything, didn't look forward, was anxious, lacked energy. The counsellor told me that 8-10 weeks is a typical time to not be able to cope. Now, eight months later, I think I'm definitely over the worst. But I still can't bring myself to fill in the form we have to put our wee girl's name in the book of remembrance.

Only my close friends & family knew I was pg, it wasn't common knowledge, so in a way that was easier. But some of those that did know about it haven't been very understanding about it either - one of my best friends referred to my theoretical next child as "your second baby", which I've never been able to forgive her for, and have been trying to avoid her ever since. My sister's never even asked me how I am. My relationship with my husband has been affected too. Basically I've always been the strong, organised one in our partnership. The one time in the twelve years we've been together that I needed his support, he was incapable of helping me, and I can't forget that. Sorry, I'm getting a bit self indulgent, and not very helpful. Don't let it happen to you! We will get ourselves sorted out eventually, I'm sure. Losing a baby pre-term is just like any other bereavement, but other people don't recognise it as much - but then I'm sure the many mumsnetters who have miscarried could sympathise with that.

Here's some practical advice anyway. I read a book called "Empty Cradle, Broken Heart - Surviving the death of your baby" which I found very good. It's also got a section on the loss of a twin, which you might find helpful Mindy. (I got it from the library, but you can get it from Amazon). Be good to yourself Ona - I hope you're getting lots of support from your family & medical staff. I've sent my e-mail address to Mumsnet, feel free to get in touch if you want to pour your heart out. Rx

Could someone point me in the direction of a website or other information about these trisomies. My brother and sister in law have just found out that their 2nd baby has a cyst in its brain and I think one of these has been mentioned to them. They are going for another scan in 2 weeks to find out more, but the doctors seemed to think that a termination would probably be necessary and she will be 24 weeks by then. I'd just like to understand a bit abou twhat is happening so I can be more supportive for them - we live closer to them than any other family so we see them most. Reading these exceptionally open posts has helped a lot too, to underatand the feelings involved. I have lost 3 babies at 10, 11 and 12 weeks through miscarriage, but this is a whole other set of feelings, and I'm so glad you have felt able to talk about it. Thanks

Susanmt, I found these for you. I'll do the links one at a time.
UK Support Group for Parents of Children with Trisomy 13 or 18

US Support Group for Trisomy 13 or 18 families

I hope these help at what must be a very difficult time for your family. Having just squeaked through my nuchal scan, and knowing two women who didn't, I can imagine how worried your brother and sil must be. Best of luck to them, and praying for a good outcome.

US Support Group for Trisomy 13 or 18 families

I hope these help at what must be a very difficult time for your family. Having just squeaked through my nuchal scan, and knowing two women who didn't, I can imagine how worried your brother and sil must be. Best of luck to them, and praying for a good outcome.

Susanmt. just go to yahoo and then type trisomy. You will get both trisomies. Can your relative have an amnio before considering terminating. When my ds at 16 wks was diagnosed with a cyst in its head I was told the chances were less in percent then a normal pregnancy having anything wrong. I did not have an amnio to find out because my dh and I personally decided to accept what ever our babies problem would be in the end. I did not want to terminate. My doctor along with a specialist who treats women with these cyst problems said they have seen many of women with unborn babies having cysts and they were born completely normal. Thats what gave me a lot of hope with my baby. The cyst size is a big factor in this type of problem. And if there are any abnormalities in the ultrasound. Like a mouth or hand deformity. I think also the size of the head during an ultrasound. My doc found nothing that he could see which was a very good sign. Do you know if she has had any tests done to rule this out? Also my doctor said that a lot of these cyst subside before birth or may even not. My babies cyst was still there at 30 weeks. I know it must be so hard on your family so I wish your brother and sisterinlaw the best.

Susanmt - hi, I haven't posted a message before but have just seen your note about cysts on the brain and wanted to share my experience with you. At 16 weeks, I had a 'positive' downs indictor, resulting from an AFP bloodtest. My chances were something like one in 250 and as the hospital's track record for miscarriage resulting from an Amnio was considerably less than this, I opted to have the test. Imagine my horror when, whilst scanning my child when undertaking the Amnio, they also discovered several cysts on the brain, of varying sizes. I was informed that this was an indication of Edwards system and coupled with my already high AFP rating was taken very seriously by the consultant.

My partner and I were counselled in a very frank manner and I think what they told us was key. Firstly- cysts quite often appear in the brain of unborn children. They are too small to see at a 12 week scan, and quite often by the time they are viewed at a 20 week scan are insignificant enough not to be an issue UNLESS THEY ARE COUPLED WITH ANOTHER GENETIC INDICATOR - in my case, my AFP reading. In other words, if I had had had a normal AFP, and no Amnio test and my cysts had been spotted at 20 weeeks - there would probably not have been so much of a scare.

It would be interesting to know therefore in what context your poor brother found out about these cysts.

To cut a long story short, my amnio came back fine
and I was then in the advantageous position of knowing for sure that my child was OK. In my case I think an amnio was a blessing. However - as the cysts were fairly significant, I was kept under a Consultant for frequent monitoring (my Hospital is a Womans Hospital and does a lot of Research) In retrosepct I think it was more for their benefit than mine to aid research into things, but at the time it took the edge of my pregnancy a bit - like this overhanging fear that something was not quite right. I even had a scan at 36 weeks (they thought I was breech) and even then they were still there, yet tiny. It seems that as the skull grows the cysts decrease.

My DS is now 23 months old and fantastic, no issues at all. Oh - and one last thing, the consultant said in cases where cysts existed for no apparent reason, the only link thay had found between them and anything else, was a high incidence of left-handedness. And guess what!! yes he is!

I am now 9 weeks pregnant again and worrying about which tack to take this time. I am considering going for a nuchal fold and if nothing shows up just leaving it there. On the other hand, an amnio would tell me straight.

Do let me know how your brother gets on - I really do wish you all well.

Susanmt - hi, I haven't posted a message before but have just seen your note about cysts on the brain and wanted to share my experience with you. At 16 weeks, I had a 'positive' downs indictor, resulting from an AFP bloodtest. My chances were something like one in 250 and as the hospital's track record for miscarriage resulting from an Amnio was considerably less than this, I opted to have the test. Imagine my horror when, whilst scanning my child when undertaking the Amnio, they also discovered several cysts on the brain, of varying sizes. I was infomred that this was an indication of Edwards system and coupled with my already high AFP rating was taken very sriously by the consultant.

My partner and I were counselled in and very frank manner and I think what they told us was key. Firstly- cysts quite often appear in the brain of unborn children. They are too small to see at a 12 week scan, and quite often by the time they are viewed at a 20 week scan are insignificant enough nit to be an issue UNLESS THEY ARE COUPLED WITH ANOTHER GENETIC INDICATOR - in my case, my AFP reading. In other words, if I had had had a normal AFP, and no Amnio test and my cysts had been spotted at 20 weeeks - there would probably not have been so much of a scare.

It would be interesdting to know therefore in what context your poor brother found out about these cysts.

To cut a long story short, my amnio came back fine
OK, and I was in the advantageous position of knowing for sure that my child was OK.In my case I think an amnio was a blessing. However - as the cysts were farly significant, I was kept under a Consultant for frequent monitoring (my Hospital is a Womans Hospital and does a lot of research) In retrosepct I think it was more for their benefit than mine to aid research into things, but at the tome it took the edge of my pregnancy a bit - like this overhaning fear that something was not quite right. I even had a scan at 36 weeks (they thought I was breech) and even then they were still there, yet tiny. It seems that as the skull gorw the cysts decrease.

My DS is now 23 months old and fantastic, no issues at all. Oh - and one last thing, the consultant said in cases where cysts existed for no apparent reason, the oinly link thay had found between them and anything else, was a high incidence of left-handedness. And guess what!! yes he is!

Thought I would let you know my SIL had another scan and the cysts are almost gone!! They arent sure what it was - was in the wrong place for the Chloroid Plexus (??spelling??) cyst but is reducing in size so thats good news.
Thanks for all you support and info about it all. They have decided to go ahead with the pregnancy which I am really pleased about. My brother reminded me we have a disabled brother who none of us would be without, thats just family life, so they dont mind even if there is some brain damage.
And they still havent found out what they are having!

susanmt it is great to hear this story is turning out better than was previously hoped.
What a great attitude your brother and his wife have towards the new baby.
Please let us know how things progress. Another 16 or so weeks to go, right?

Susannt, Im so happy things are looking much better for your family. I wish them the best.

I thought I should stick this in on this thread - that my 2nd nephew was born yesterday lunchtime, weighing 8lb11oz. He was checked by the peads in the afternoon because of the previous worries about the cyst, but he is perfectly OK! Looking forward to going to see him next weekend!

Hello Susanmt, I am so very happy for your family and the outcome of the whole situation. I wish all your family the best with the new baby. I always wondered what had happened.

susanmt what great news.
Give the wee boy a little kiss from all his mumsnet "aunties"

Wonderful news, Susanmt