Here are some suggested organisations that offer expert advice on SN.
my husband wants us to have more children(63 Posts)
Me too Fio, I'm with you on the fear thing. I would love another babe so that dd could have a sibling (plus dd now 13mo so starting to get broody again ).
I had moments of fear with ds3. Which I didn't have when pregnant with ds2 as the extent of ds1's problems weren't apparent until after ds2 was born. now ds3 is here and seems fine it is lovely. In fact I'm enjoying it more than ds2's babyhood, as with ds2 I was watching him all the time for signs. Knowing that he's OK I'm not assuming there's only one outcome for ds3 iyswim.
Did you get any figures from your genetic counsellor? Not that they help much really as it's stlll all guesswork.
Ds2 is my last baby so I haven't got to make the decision about another baby or not, but I know where your fear comes from.
Are the problems with your dd's genetic? Have you been advised against having another baby or told that you should go ahead or wouldn't it bother you either way?
TBH, even though we are not intending to have another baby, I'm so paranoid about getting pregnant that I won't let dh near me (with or without contraception - I just dont feel I can take the risk - extremely paranoid, I know - but given the way that ds2 came from out of the blue, after being told that due to dh's sperm count it was extremely unlikely that I would fall pregnant - and, after being really ill with Pneumonia - I just am not convinced by statistics any more!!
I know that our way forward is for dh to have the `snip', but ironically we are both hesitant because it seems so final!! (ridiculous I know!!)
I know that we're going to have to do something soon, because otherwise this no business is going to become a real issue
jimjams, i feel like you as I was pregnant with ds when dd's problem became apparent. If they had of been apparent I am not sure I would have got pregnant so unknowingly iykwim. Genetic Dr says it isnt genetic. She thinks the microcephaly was caused by the birth. She said it could be either to with, prolonged rupture of the membranes, being meconium stained at birth, prolonged labour, being failed ventouse and forceps and some other....cant remember it has gone hazy. She said it isnt 'genetic' , although they cant say for sure whether it will happen again as they dont know. I feel it was the birth as you know, but I feel ic ant take that risk. Dh wants a brother or sister for ds who is NT as he thinks it will help him. i dont know.
I can see what your husband means. I do feel like my four are a little team and stick together. Having said that they may not remain close as adults.
I am glad I have four but do find it incredibly hard work. Although people say it does get easier as they get older I actually am finding they all need so much more attention than I can give.. Even minor problems take so much time, although autistic ds3 is the most needy, two of my others are on the sn register and although their needs are not so great, from my pov it just adds to the hard slog.
It very much depends on your personal feelings and cicumstances. I work p/t as financial
necessity and again this takes away from the time
I can give them.
I am sorry that I sound negative
Oh God Fio - its a hard one. In theory I would like 2 more children because a) I'd like to know what it is like to be mum to a child who doesn't have SN and b) I do think it might be nice for any siblings to have each other as I imagine it will be hard for them to be a sibling to dd - so I am kind of with your dh on that one.
But - I am also terrified.
And, I also have no idea how I would find the time/energy etc to look after anyone other than dd. And, a bit selfishly, not sure I want to give up what little freedom I have now to look after a baby.
I know it isn't rational but even though you don't think your dd's condition is genetic, if you are like me, you will still be scared that any new baby could also have SN. I think once it happens once, it is just like, well, this can happen.
And I'm with you Merlot, statistics don't mean all that much to me anymore. Dd has a condition that affects something like 2000 people worldwide - so with odds like that, well, anything can happen!!
Sorry Fio - this has turned into being about me . I think I am just saying I know where you are coming from. I've been thinking about it a lot lately.
I have bored for England on this topic on MN before.... If we didn't have a clear genetic link to autism I would definitely have had more. My problem was my own health meaning that we had to delay long enough to know only too well what its like to have a child with severe SN AND I was 43 by the time we had DD . Our reasoning was that, unless we at least tried to have another child then we'd never have any opportunity of being parents to an NT child and we pretty well knew what the future held in terms of grandchildren, weddings, even little things like shopping trips. Imo we had a higher than average chance of having anotehr with ASD, even higher than those who have an ASD child already, as there are 2 other known people on the spectrum in my family (even though the genetic consultant couldn't factor this in, it makes sense to me). At my age we just decided to make it "possible" and didn't really expect it to happen so quickly which was a nice surprise. We were also terrified of having another boy and my Prof who dealt with the pg due to my health was willing to allow termination of a boy which we might have done if I was not sooooo old!! I know some people might find that shocking but come and live here for a week and you'll soon understand I also had all the tests available and would not have had a baby that had any known SN, I've got the t-shirt and don't want another if at all possible. I would possibly have another so DD could have a sibling if I were younger but with such a high risk of ASD or something related, I'm not so sure. She's not that unusual among the families I know, lots have one with ASD and one NT, the kids don't know any different.
I will say that it is definitely harder if your child with SN is the oldest/older and you have younger ones who need a lot of looking after, I can only manage by having help two days a week (I also do things with DS on those days) but two children who are very dependent is very different to one with SN and older ones who can play on the computer, have a bath on their own, have friends round to play etc. DD is so gorgeous though it is all worth it! (Biased. moi?).
Basically its the same as for any other pregnancy, when you're really ready you know and if you keep coming up with reasons not to, then you're not ready. I think Beccaboo was also thinking about whether to have another or not.
I am at the stage we're i think i want antoher but i am so petrified - as i really don't think i could cope with another SN child (even people will always say you can) so fully understand you.
My god we have been lucky (I think) as another Sn child would have really brought us to our knees. God knows what it would have done for our marriage which is strong but..... it was a big, big risk. But then I do know people with more than one (MrsF and Coppertop apart from anyone else) and they cope and have "interesting" lives! I think another severely ASD child would have killed us but we decided we just had to take the risk.
do you know I am even petrified about having another girl as i dont think i could cope with it. i wanted a daughter so i could do all those mother daughter things and sometimes when I am wallowing I feel so cheated. What would i do if I had another girl? would I compare would it make it harder to come to terms with? I feel so confused and I think dh would too and does most probably, he seems in two minds but keeps suggesting it.
I know that SN can turn up out of the blue. i had genetic counselling before dd as my sister had cystic fibrosis and then went on to have dd who has something totally different. Its so scarey, glad I am not the only one who worries
Funnily enough I didn;t worry much about autism during ds3's pregnancy (maybe because i knew I wouldn't know as soon as he was born). but did worry about other major SN. Also knew thugh that I couldn;t terminate even though I also recognise that another child with ds1's level of need would bring us to our knees (like Davros) so although it's not a very sensible decision it is one that I knew I wouldn't have to make. I worry about autism and ds3 now though although I think he's OK.
The other thing though is that I reckon there's a strong predisposition to autoimmunity in the family, but because we believe that thimerosal was heavily implicated in ds1's case, and because unvaxed ds2 is fine it made me moreconfident that we could avoid history repeating itself by avoiding triggers.
Dh has wanted a 3rd child since ds2 was a baby. We've just about got to the stage where we're considering having another one. Autism seems to be common in both our families so it's likely that no.3 will be on the spectrum too. We've been quite lucky though tbh as ds1 has made a lot of progress since dx and we were able to set up early intervention for ds2 which is working well. In some ways it's been easier having 2 with ASD rather than 1 ASD and 1 NT. They both thrive on the same routine so no complaints about how it's boring because we always do the same things. So far there hasn't been even a hint of jealousy. Ds1 has announced he wants 10 more babies and although ds1 and ds2 lash out at each other when they are angry they are very close. Life is certainly 'interesting' in our house though.
I think the thing that would be different this time around is that, as others have also said, this would be the first pregnancy since getting a dx. Ds2 had already been born when ds1 was dx'ed.
I should probably keep out of this since I have no experience, but.... I would bet if you did have a girl, once she was there you would just have 3 individuals. I also think your doctor is right and it's not genetic, but there are no guarantees, are there. Don't be petrified
I really know where you are coming from with the girl thing Fio. I think that sometimes, that I would like another girl so that I can have that real mother-daughter thing. But then I feel horribly disloyal to dd .
The other thing I worry about with having other kids is whether I would love them as much as I love dd. I just feel my relationship with her is so intense. I worry that no-one else would get a look in. I think that is usual with your first child but because of dd's SN, I don't know, I am just so utterly involved in her IYSWIM.
well we were told asd is not genetic, so is it just coincidence that our three have autism then, i think not, our twins were dx when our son was 16 months he was dx a year later, there are times when i feel cheated, times when i would love to be the parent of a NT child, but autism is our ordinary now so mostly we just get on with it, if someone could say 100% we could have a child without asd then i would be tempted but i feel disloyal even thinking that.
Onlyjoking, I don't know who is telling you that autism is not genetic! There is tons of evidence that it is including twin studies. Even if its genetic and there from birth or genetic and a predisposition triggered by some outside factor. That is why these crap genetic counsellors give you a much higher chance of having another if you've already got one, it is genetic! Socci, I know its easy for me to say as I am certain that DS was autistic from birth so I don't have any doubts and with my family, well! But whether it was there from birth or triggered I don't think you could have anticipated that, you'd just have no reason to question it any more than all the other millionns of parents who don't question it and don't have a problem. HITC, I know what you mean about the intensity of the relationship and I think that was one good thing about being forced to wait, by the time we had DD, Ds already had his life fairly settled and I managed to organise things so he still gets a lot of my time but DD gets more of me when he's at school. As I said before, its really a question of whether you're ready or not, for whatever reason. I was ready because it got to now or never for us, we didn't have time to see if our feelings changed!
agreeing with davros again! After having ds2 I was still broody- having had ds3 I'm now not. I feel complete. I think the biggest reason for having another is just because you want another. forget all the disability stuff.
re the genetic thing- in George and Sam I'm sure it says that if you have one autistic child you are 75 time (eek) more likely to have another than joe public. Whther it's purely genetic or how much is genetic plus environmental mtrigger will vbary though.
Davros I have to email you to say THANK YOU (arrived today)
Sneaky hijack ..... oh good, I was worried as I didn't put extra packing tape on, I hope nothing fell out.... you did get DS didn't you?
I know where you're coming from Fio, this is one of the things I personally find hardest about having a child with SN.
I'd love another (or two ), but I'm scared stiff too. We've been given a 1 in 10 risk of recurrence because the geneticists can't rule out the possibility of dd having a 1 in 4 autosomal recessive condition. I sometimes wonder how likely it is that dh and I would both be carriers for a faulty gene...not likely. However, we also have a dd with CP, vision problems & GDD that no-one can fit to any one syndrome, so hey if that happened, so could the 1 in 4 situation. I've moved from thinking 'why us?' to 'why not us?'. Statistics stink - I hate the fact that my future life choices revolve around a bunch of numbers.
DH and I are going to bide our time and see how dd progresses, and also whether we get a diagnosis or not. Sometimes I think, what the hell, we love dd and we'd love her sibling, SN or not.
Sorry, I'm not really helping, but it's something I think about a LOT.
Fio2, I am not sure either, but dh would like another baby......eek! I think I've made up my mind, and then I see a gorgeous baby and get all clucky....and then I see a hugely pregnant woman heaving herself around the supermarket and think 'no way'!!
I would love and adore another baby, but I don't feel incomplete without one. Maybe I would in a few years time, when it would be too late to do anything about it. Now that ds is 3 and a half, I'm just starting to get my life back....do I really want more years of nappies, breastfeeding and all that?
I think even if ds didn't have ASD, I would be scared as he had quite a traumatic birth and it wasn't a great experience. But the SN element adds a whole new dimension to the decision.
Davros, I found your post so interesting and so honest, you have definitely voiced my unspoken fears. I want to be a granny too, want to have all that stuff to look forward to....want to have the 'average' parenting experience...and worry about how I would cope with a second child with SN. What I'm thinking at the moment is that if we do have another I'll wait until ds starts school next year - then I could have time with a new baby and still have dedicated time for ds.
I suppose that, when it comes down to it, there are no guarantees. Having a baby is a risk, whichever way you look at it.
I forgot to add - because its kind of irrelevant now - but this has been a bitter pill to swallow. I had invasive antenatal screening when I was pregnant with ds2 because my husband carries a gene anomaly on the 15th chromosome. We were given the all clear.....But,
unfortunately ds2 definitely does have complex special needs and quite possibly a genetic syndrome - tests in the melting pot. So I have to ask? What was the use of all that screening? It made us feel that we would have a healthy NT baby, but sadly that isn't the case.
Of course, ds2's condition may well not be genetic....a fluke of nature....or perhaps he has inherited something else on another chromosome.
Whatever, though (and Tamum please correct me if I'm wrong) - if the geneticists dont know exactly what is wrong and are therefore examining that particular gene in sufficient detail - there are no guarantees
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