Two babies with DS in a row

[Michellephant]

Anyone been through this?

My first baby was found to have a heart defect at my anomaly scan which was heavily associated with DS. Amnio confirmed the DS and I gave birth to her at 22 weeks.

I'm currently 5 and a half weeks pregnant with my rainbow and scared that this pregnancy is going to end badly too. I've been told two different odds from consultant (1 in 1000) and the screening midwife (1 in 100) so I don't feel very reassured. I know worse case scenario that 1 in 100 is still only 1% but once you've been the 1 person before (I was 23 at the time so wasn't given an reason to believe DS was likely, I was talked out of screening for it by my midwife) it is hard to see how there can ever be a happy ending.

I want this baby to be healthy but I'm scared that so many things can go wrong :( I know it is beyond my control though.

[ghislaine]

Hi Michelle, this is a very natural fear and I think is particularly strong when you have no experience of having a healthy baby. I know I felt destined to never have a child when my first pregnancy ended in a termination for DS (I've since had a healthy baby and am pregnant again).

It does happen sometimes and there is a poster called havingkittens who has had that exact experience. She recently had a healthy little boy. In this pregnancy I came across some Australian research into repeat trisomy pregnancies. The rate in T21 is about 2%, so it's very low, but of course when you have been the one in however many, you lose faith in statistics and relative risk scenarios. It is much less common to have two different trisomy pregnancies or a repeat T18 or T13 pregnancy, but that does happen too.

There are no guarantees in any pregnancy as you know, the only thing you can do is wait it out. Have you been offered any specialist screening this time?

[AliBingo]

Sorry to hear about your baby.

I think it's really unusual to get two T21s unless you have the mosaic form which is genetic rather than a random occurence.

I had a termination for T21 in March and have been told my risk will be 1 in 50 for any future pregnancies, which terrifies me.

I am hoping to try again soon and I think I will be elated but also terrified if I manage to get pregnant again, so I will be trying to just get through the first trimester without thinking too much about it, until I can get to the point of having a CVS. I am particularly worried as I am getting on a bit though so a T21 is more likely for me anyway at 38. If you are younger your odds will be much better I think.

Like you say, it's beyond your control, and also the odds are very much in your favour so try and enjoy being pregnant and stay positive if you can. Not too long now until you can get more information.

Congratulations on your pregnancy!

Cheers
AliBingo (formerly known as BigCorrieFan)

[AdiVic]

Hello - I had a termination in feb 2011 for DS at 17 weeks. I'm not going to go on about how horrible it was as you know too well. I fell P again late aug 2011 and at the 12 week scan they found an echogenic bowel, which can indicate DS. My odds went from 1 in 50 to 1 in 14. Further scans and bloods etc showed no sign of DS but there was still the concern over the bowel thingy. He was delivered at 38 weeks as they wanted to get him out early as poss. The whole pregnancy was so scary and I think I panicked the whole way through - i spent 9 months worrying, suffered with depression/anxiety. When the time came to have him, they had a team from SCBU on stand by and I was terrified. As it turned out, I had him really REALLY easily within an hour (they had advised a cs) and he was a fine weight with nothing wrong. He is now nearly a year and is a total bundle of joy. If I was younger (39 now) I would have another.

I did opt for an amnio, I turned down the CVS. Yes it is beyond your control, and what you are feeling is totally normal. Hang on in there - it would be highly unusual for another. Good luck, and al lthe best x

[shakemyhead]

I lost a little girl to ds in oct 2011. Subsequent pregnancy just had screening. nt of 1.3 mm and odds of 1 in 21800. That was good enough for me. She feeding now. I'm 37.
Dr stated you have background age risk plus 1 in 100. So at 37 it was 1 in 227. Including history was 1 in 127.
Hospital got be in for early dating scan at 7.5 weeks so screening could be done early as poss. ( still had to go back the next week as baby not in correct position).

[Michellephant]

Hi,

I forgot I wrote this post. My termination was actually the least distressing part of the experience for me even though mine took 5 days (unusual apparently, I had been prepared for 2 at most). The process of diagnosis took quite a while so that was horrible, and then I found the telling people and seeing them afterwards was hard too. I found my actual experience of labour quite peaceful (if painful physically and emotionally) in comparison to those things.

Anyway, I decided to pay for the Harmony test privately. I get the results on Tuesday and I have my nuchal scan with the NHS the day after. At my first appointment to have the harmony test at 10+6 days they checked the nuchal fold and my baby's heart and both looked perfect (nuchal measurement of 1.6mm) but we wont get that set in stone until Tuesday. It's scary but I'm glad I will have a good idea of my baby's future prospects in terms of the main chromosomal disorders on Tuesday.

I'm 24 but obviously age makes very little difference. 2/3 of babies with DS are conceived by younger mums, older mums just have a higher likelihood of conceiving a baby with a problem. I never knew this until my follow up appointment after my termination. Up until that point I felt like a bit of an outcast to be a young mum who had conceived a baby with DS, but it makes me feel better to know that actually there are more younger mums like me conceiving babies with DS than the older ones! It never seems to be put like that by midwives and doctors before we get any bad news though!

[AliBingo]

Gosh a 5 day termination sounds horrendous :(

I hope that your Harmony results are good. Even though more babies with DS are born to younger women, I think your personal odds at such a young age :) are very good so hopefully lightening will not strike twice.

[Michellephant]

Hello,

Funnily enough, those 5 days were more bearable than the days I kept getting the bad news that resulted in it, or the days of grieving afterwards. The physical pain became a sort of distraction from the emotional pain. I guess that's the appeal of self harm to people that choose to do that.

I forgot to update on here but fortunately my harmony results were negative. My "background odds" started off at 1 in 148 and this was brought up to 1 in 2924 by my combined test results (bloods and scan) and better than 1 in 10000 by the negative harmony results.

I wont feel "safe" until I get beyond 20 weeks but it's a huge relief to get some good news to help reassure me that all might be OK this time. I know my age should be a reassurance but it really don't feel like it!

Thanks for the support :)

[AliBingo]

Great news, really pleased for you x

[Michellephant]

Hi everyone,

Just to update that I had my anomaly scan on Tuesday and everything looked as it should do. I'm also having another girl. It is taking me a while to get used to the fact that everything might actually be OK this time, but hopefully as Christmas approaches it will really start to feel real!

Thanks for being supportive of me :)

[Lorakk]

Good news Congratulations!

[lostlove]

Brilliant news!

I hope you'll be able to relax a bit now and enjoy your pregnancy