Having more children

[used2bthin]

Hi all,

My situation is fairly complicated as I have a new partner so he was tested to see if he was a carrier of DD's genetic condition and he isn't (its inherited from both parents so that means our children shouldn't have it so a relief). So thats easy enough.

But DD also has SLI with associated learning difficulties and a small head and now epilepsy so we are awaiting an MRI to see if there is a cause that brings it all together. And recently I saw the geneticist about all these things rather than the other condition and she ran some tests which showed a small deletion on chromosome four. When I spoke to her I asked would this be likely to affect DD's half sister (her dad and his partners baby) and she said it wasn't that likely.

So I wonder whether there is any point worrying about this from DP and mine's potential children.

And of course I worry about health and learning difficulties as the thought of going through what I went through in DD's early days is stressing me out. I know there have been threads like this before and lots of people have more children after having a child with SN so thought it was a good place to come to have a worry about it and maybe reassurance. DD is just lovely of course but I can't imagine having two of her

Our geneticist told us that he was 99.9% certain that we wouldn't have another child with DD's condition (we weren't carriers of defective chromosone) but "never say never". As a consequence, I had a CVS test carried out at 10.5 weeks into 2nd pregnancy which ruled out DS having DD's condition or any other chromosone abnormality.
However, DS was dx at 6 with HF ASD which no pre natal testing would have picked up. So basically if you have been advised that it is 'unlikely' that you will have another child with the same condition as your DD then there is a pretty high chance that you won't, but never forget that you always carry the same risk as the rest of the population of having a child with any other condition.
It is a tough decision and whatever tests you do or don't have, you will not believe that your baby is OK until you see him/her in the flesh. Sorry if that sounds gloomy, but I wish you all the luck in the world with your decision.

Argh just lost long post. That is very true about other conditions, a friend with her first baby has just refused the triple test for the same reason.

Also dd having her genetic condition didn't stop her having epeilepsy etc on top of it. And I remember being really down at her developing psoriasis as it was another genetic thing, seems crazy as it was the least of our worries medically but...!

Just remembered I am waiting on tests to see if I have the same deletion on chromo four so I supose that makes a bit of difference.

I cannot imagine a newborn period where we just go home it already makes me sad thinking the next baby will probably remind me of how awful dd's start to life was.

OOh may as well be open since I am being ott emotional today it is too late in a way as I found out I am pregnant last week! ssh1

Congratulations on your news. If you want to go down the route of CVS testing, (usually done around 12 weeks) get to your GP and arrange to be booked in with Midwife asap (if you haven't done so already). The decision to test or not is a difficult one as the test itself carries risks and you then have to decide what to do if the test brings up any problems.
I made the decision not to tell any friends/family about the pregnancy until after the test results had been received - just because I didn't want everyone giving me their opinions about what I should do.
Hope all goes well for you.

Do you think your dd would benefit from a sibling?

Used2bethin, missed your announcement. Congratulations.

Do you mind if I ask if was planned but now you're having a wobble, or was it unplanned?

Thank you! It wasn't planned as such as we are about to move and meant to be sorting out a wedding but we weren't trying v hard not to and happy about the news but a bit worried about the stuff I can't know if that makes sense.

I think I probably will just have routine tests but then that is because I haven't looked into it much possibly and am not sure how DP will feel about it.

I suppose at least I know I manage with DD so can cope with stress!
DD has an MRI in a week I am not going to be able to go in with her am I?

I always thought DD would really struggle with a sibling as she used to be just terrible to friends younger children but her half sister has actually made her love babies and I think she would like the company. There will be a five and a half year gap but in terms of development it may be more like three years which may be good in some ways.

used2, congratulations We were told that as dd3's syndrome was de novo we had the same risk as anyone else my age which was reassuring definitely, didn't stop me worrying though. I had extra scans throughout but only had non invasive tests, I refused anything else for the same reason, you can't test for everything and for me it would have caused extra stress. Ds2 has been very good for dd3 even though at 2 he has mostly overtaken her now in many areas.

Used2bethin, does that mean your a due in June like me?

Ah congratulations! Yes june 8th according to online calculator. So excited though trying not to be as am worried too. I'm 32 now compared to 26 last time and am alternating between feeling sick then worrying at not feeling sick enough!

ninja thanks, that does sound good, I can imagine its both tough, and a relief at the same time when the younger over takes the older sibling. I am hoping it will be a big surprise how easy it is without medical complications (at any rate we know not the same genetic thing as DD in terms of being steroid dependant so hopefully that means not lots of blood tests etc for the baby.

I think I will see the doctor tomorrow and say how anxious I am and hopefully it won't be long till I see the midwife.

Struggling with the no wine and limited caffiene atm but I guess once sickness kicks in it won't bother me so much!

Hi all, I am Lauren the project coordinator for SWAN UK which is a support project for families of children with undiagnosed genetic conditions / going through the process of diagnosis. We have a growing community of families supporting each other and swapping information about a range of subjects from equipment to tacking part in genetic research studies. We can also help you access accessible information about genetics in general (like testing) and accessing travel insurance.
If you want to know more about us please check out or project blog www.swanuk.wordpress.com or come and find us on facebook www.facebook.com/SWANchildrenUK.
You can also contact me directly on [email protected] or 0207 704 3141. Take care and I hope to hear from your soon, Lauren

Thanks Lauren, I have heard of you through mumsnet I think- I will take a look.

used2bethin, when you're ready do come and join us on the 'due in June' antenatal thread!

used2 - congratulations.

Hi Used2be (it's me Sport) Congrats, fantastic news, I haven't read the whole thread just noticed the big announcement. I'll post again later in the meantime hope you are feeling well, two June babies on the SN board v exciting! Hope to see you on SWAN too x

Thanks tryingtokeepintune and sport! Very exciting and three of my good friends in RL have are pregnant too, its in the air!

Starlight I've just seen your thread and that you are due the day after me! How funny and I will come over to the due in June thread didn't know there was one. See you there!

Hello used2bethin .

When I was having DS3 last year we also avoided invasive testing but had extra scans including a cardiac one as i was determined to (try) and be prepared if there was a problem. I'm not entirely sure how helpful it all was as obviously nobody could guarantee me the health of my child forever!

When he arrived I'll be honest and say that I grieved all over again for DS2 having his syndrome, he was just so different. So well, alert, he fed, he even cried normally. However, once the hormones legged it I have loved every single moment of having him. DS2 loves his little brother, despite him trashing his toys .

I will say though that I am super paranoid. I watch him like a hawk health wise, & only today took him for a full on hearing test, (at 17 months & developing fine!) as I need to know everything is okay. I did give a wry smile to myself thinking that for four years I begged to be believed that I wasn't paranoid etc, to going in today and freely admitting that this time I am indeed completely bloody paranoid!

Many, many congratulations. Enjoy your pregnancy it is still such a special time. I am so pleased for you.

hi slightlycrumpled thank you and congratulations on DS3! I think I will be the same about feeling sad at DD's condition. I am being seriously OTT about pregnancy advice and will probably finish work as early as I can this time to try and take it easy as I got myself into a state last time, even before knowing DD was going to have anything wrong.

It is all very exciting and nerve wracking at the same time, its also different this time in that I couldn't care less about the things that got me down when I was expecting DD like weight gain and not being able to go out etc, this time I can't wait to have a bump.

My friend said to me that she bets I find another baby so easy in comparison to all the hospital admissions and night time meds, injections etc with dd but I can imagine I will be just as paranoid too!

Hi all, I've had a bit of a surprise today as got the results of my blood test and I carry the same deletion in chromosome four. It is a really small deletion so the geneticist says since I share it it may not be significant in terms of DDs learning difficulties and epilepsy etc. We'll see what the MRI shows up next week but I am a bit worried as it could be something I pass on to this next one. Anyone else been found to share a deletion?

I wonder if that means I struggle with language and memory! I definately do with memory but hadn't thought it was anything major.

bumping this in case anyone has experience-I know lots of you have had genetic testing done.

Posted too soon, re testing I mean have had on yourselves and wondered if anyone knows the significance for future children if you yourself are unaffected by the chromo deletion? Will ring geneticist this week but going to be busy due to dd's MRI.

Hi Used2bthin. I can't help you much with the chromo question, but I am in the same position as yourself. Ds probably has an unidentified genetic syndrome and I have just found out that I'm expecting dc2 in June as well. Ds had a rough start to life and I really hope that dc2 will not have the same issues. It's playing a lot on my mind at the moment.

I think that your friend has a good point about another baby being easy! I didn't actually realise that ds was that much more hard work until he was about 6 months, still taking 1 hour to feed and I noticed that none of the other baby's mothers carried a hand towel in front of their child to catch the refluxed milk!

I keep thinking that if this child does have the same issues, then at least I will know what to do about them and there will be less head burying in the sand. I am going to be so paranoid.

Does anyone here know if having a child with previous genetic issues will automatically put my pregnancy into the 'high risk' category?

All the best for your pregnancy, Used2. I might try and find the 'due in June' group now!

Just wanted to say congratulations on your news Used2bthin and Stillinmypjs

stillin, congratulations It did automatically put me into the high risk group on its own, I also had additional factors but I had extra scans and up to 20 weeks they were done by the consultant. When everything looked ok at that stage I transfered over to the usual sonographer for scans. Ds2 was also checked as soon as he was born by a paed, he's 2.4 now and all seems well so far, although I did frequently ask dd3's people to check him over on a regular basis when he was tiny they were lovely and said he was doing what he should be, I didn't think having the 'average' baby could make you so happy

Congratulations Stillinmypjs - lots of good news all round.

As you know my DS1 is still undiagnosed - Geneticist told us that we were at no higher risk if having another child with a genetic condition than a couple who had one NT child - DS2 was already born at this stage.

DS2 is much easier than DS1 for all the obvious reasons - no therapies, no hospital, less worrying etc etc but I think one of the nicest things is just being able to appreciate each stage he's reaches so much more and not taking anything for granted. I think I'm much more patient with him than my friends are with their 1 year olds. While they get annoyed or stressed that theirs are throwing things, tantruming, and generally up to mischief - I'm just so glad and relieved that DS2 is. He's brings a certain amount of normality to life which helps us keep a balance - hope that makes sense.

Congrats on your pregnancies ladies - hope you're all keeping well and try not to worry too much :)