Trying for another baby - scared

[Sleepstarved]

it will happen again basically.
DD has a gross motor delay, as yet undiagnosed with the paeds thinking it might be hypermobility and/or nothing at all.
We want another baby but I am scared of having another child with difficulties.
I am so incredibly jealous of my NCT friends with their babies just doing stuff on time with no effort at all and I want that.
But also I think a sibling would be good for DD.
I feel bad for DD that I want a normal baby, because it makes it sound like she isn't good enough. But I really don't want to have two children who need extra help or have a child with more severe problems. (ATM, DD is at the mild end of any spectrum she might be on).
Those of you with an SN first baby, did you have another? How did you cope with the worry that it will happen again?

DS2 has ASD, but I didn't know when trying for DS3. So I had none of your concerns then, but watching him develop like a hawk wasn't exactly fun. As it is he's quirky but had I not had DS2 I wouldn't have even spotted that.

Have you had any genetic counselling about your DD? Any idea of the likelihood of another child having the same difficulties?

I have to say that having DS3 has been really good for DS2 (and for me!) as he is constantly being challenged and has a built in friend. For me, my 3 DSs have ensured that life doesn't completely revolve around DS2. [busmile]

DS2 has SNs, but we also didn't know when trying for DS3. We also have been watching DS3's development closely, but other than being unbelievably stubborn he doesn't seem to show any of the traits that DS2 shows.

I agree with EllenJane - it keeps us grounded and keeps things in perspective, so that life isn't always all about SNs.

But, to be fair, we were told while pregnant with DS3 that we had a possibility that he had DS (I believe the test results were either 1:12 or 1:9 and they were horrified that we refused further testing at that point). So we were, for the remainder of the pregnancy, gearing up for the very real possibility that we would have two young children with SNs. DS3 is NT (well, as far as we can tell, he's only 2yo, but seems to be progressing and developing as expected).

Happy Easter! [busmile]

I didn't know (well I did but was choosing to believe I was over-anxious as I was being told) about Ds 1 when we had dd.

Now we are having Ds2. I'm scared out of my mind but also have a more sober opinion on my right to an NT child. None of us have that right so you need to go into it with acceptance of what may be.

Also, if I had known about DS2's SN when trying for DS3, I may have decided not to have had him. Again, in retrospect, having DS3 has been nothing but good for DS2, so I'm glad I didn't know, IYSWIM?

I had twins first. TDD has a craniofacial condition and is deaf so is classed as SN. TDS seemed NT until he reached 4 and someone at Nursery said that they thought that he had Aspergers. I was devastated! Then we had DS3. They watched my pregnancy like a hawk to see if he presented with the craniofacial condition, which he didn't. He is NT. DS4 pregnancy showed up fluid on the brain and liver issues, no craniofacial condition. He is born with the craniofacial condition, is deaf and has ASD. So basically, it's a gamble.

I agree that you should see a genetic councillor but please bear in mind that not everything is detected via a blood test. We were given 5-7% chance of reoccurrence after DD, but as they couldn't detect the faulty gene they would rely on clinical diagnosis. Now that we have another child with the same condition, they are looking at a dominant recessive gene that hasn't occurred before in any current family members. They still can't find the faulty gene btw! We are considered a rarity in the craniofacial world!

Happy Easter to you! [bugrin]

We didn't get dx (ASD)for ds until dd was born 4mths old although I knew when we were having/trying for dd what the dx would be. I didn't go down the genetic route because I didn't want to spend my pregnancy stressed and harming myself and the baby. I can honestly say that dd was the best thing for me and ds and dh - she's sociable and at 13mths beginning to speak, pointing at things and completely engaged with the world around her. I do watch her like a hawk and I won't deny that whilst she is walking holding onto to things the fact she isn't freely walking at 13mths makes me worry a little. She adores ds and he her and it is lovely to watch them together as she will not allow ds to ignore her. I'm taking the view that if they are both SN then they have each other to feel safe with, if she isn't well then that's a bonus. Someone on here said that siblings are the best therapy and they are.

Frizzcat, excuse my ignorance but why does your DD not walking at 13 months concern you? That seems very much in range, even early. My DS is 16 months and still not indepently walking - almost - are there links with SN?

Genetic testing is not really an option as DD has no diagnosis.
She has been seen by three paediatricians and is having physio but the only thing they have found so far is that she has a weak core and is a bit hypermobile.
I really want a NT child and I really don't want another one with problems.
I don't know if I am going to drive myself crazy through a pregnancy and the first six months of a new baby's life looking for signs.

@chester because I'm a neurotic lunatic! A child should walk between 1yr and 18mths on average - average being the operant word as I've known some nt children who didn't walk until they were 2yrs. I think when you have one SN child you are so hyper-sensitive to all the tick box milestones that you want to get them ticked ASAP! So don't let my evident lunacy freak you out

@sleep nothing is guaranteed and no one can tell it will all be fine, but what you are feeling is perfectly natural. If you're set on going for no.2 then perhaps have a chat with your GP and ask for a referral for counselling - you don't want to go into this deranged with worry which could ignite some PND when baby arrives. This afterall is a new life you will have created and you deserve to enjoy that experience. A counsellor won't give you the answer to your fears but they can help you come to terms with them and maybe not be so scared of the future. I do hope I'm not offending by this suggestion but I do feel you need to get it all out - better out than in as they say

Can I just ask is it normal to be offered any form of genetic testing with a diagnosis of autism? My son is 3 and a half and was diagnosed at 3. When I asked about the posibility of and future children having autism I was told that it was just chance so our riskd weren't any higher than anyone elses. This goes against everything I thought I knew about Autism, that even though they don't know exactly what its cause is, there does seem to be a strong genetic link?

My family had genetic testing because of a Craniofacial condition. In some families there is a reoccurrence of AS/ASD through generations, but I suspect that most clinical geneticists would say that you have a very small chance of another child with ASD. If there was no prior familial history.

Sazza, there is an increased risk for siblings of DC with ASD. It's quite a lot higher than with no family history. I can't remember the exact figures but it's something like a 10 fold increase. 1 in 60 - 100 children have ASD, for a sibling it's more like 1 in 10, higher if it's a boy. They were talking ignorant nonsense. Sound like, just tell the poor dear what she wants to hear. You should be told the truth so you can make an informed decision.

In fact it's even higher. www.bbc.co.uk/news/health-14507532

Sazza, there's no genetic test for autism, it's too complex and they haven't found a gene, there may be many factors, many genes. But statistically the chances of a sibling getting a DX of ASD is 18%.

Littlest DS's Autism is, we think, due to him having had ventriculomegaly when he was developing in the womb.

Ellen, I hadn't realised that it was as high as 18%. TBH, I believe that it's genetic roulette. I would love for him NOT to have ASD, just as much as I wish he and his sister didn't have Treacher Collins Syndrome, but it is what it is and I do my very best regardless.

The 18% is an average. If you DC's ASD is due to a different reason than hereditary genetics, your chances would probably be less, if it is hereditary, your chances are likely to be more.

According to the recent US report the statistics is 1 in 88 anyway.

This breaks down into 1 in 54 boys and 1 in 252 girls.

So if you have a boy, you have a 2% chance of him having ASD overall.

Scary, isn't it Star? I had no idea before DC, quite happy and ignorant.

Well from my point of view, having been dealt a very strange deck of cards, DD severe TCS with all of her many gruelling surgeries, the constant vomiting, the breathing, the feeding, the speech, the deafness etc seems easy now compared with DS4's ASD, deafness and no speech!

When she was small and I was tube changing and turning screws, causing her pain either directly or indirectly by doing things no parent should ever do to their child. It honestly seemed like the hardest job in the world. How I wasn't a basket case at the end if all that I will never know. It definitely shapes you as a parent and as a person. Preparing me for littlest DS and his needs. A baptism under fire.

Well given that many undergo very risky procedures to establish whether a child has DS and often then choose to terminate, on an initial risk factor of 1 in 100, then it is logical to assme that a risk factor of 1 in 88 is very scary to most - yes.

sleepstarved do you feel you need to start trying ASAP or can you wait a little bit? It sounds like you are facing a lot of uncertainty and stress right now, and I'm wondering if you need breathing space: space to see if the picture with dd becomes clearer, and space for you to work out if you'd be able to cope with the possibility of two sn children. I was pregnant with dd when ds was only 7 months old and I had no idea there were potential issues with him (currently awaiting dx for ASD). I'm so thankful we had our two so close because if we'd waited another year I think my growing unease over ds's develoment would have stopped me trying for a second - not because ds's issues are severe but because I'd be scared of a much more serious expression of ds's problems in a second child (genes scare the hell out of me). Dd is nt as far as I can tell and yes they are incredible for each other but as everyone here has said you don't know what the future will bring to future dcs. (obv that goes for nt too - DH always points out that worry is an inevitable part of parenting - dd could get bullied at school/hit by a bus/abducted by aliens etc etc) Everyone copes differently with the issues of having a sn child and i'm well aware I'm currently dealing with it badly - it's all very raw at the moment. If I wanted another child I know that right now I'm too consumed with worries for ds to give a baby the care it would need. But everyone is different, I think you just need to take the time to work out what's right for you and your family. Good luck.

Just to add my experience,DS is 5 ,diagnosed autism at 3,DD is 2.5, is currently on waiting list for paediatrician and is having speech therapy.has either SLI or ASD.there are no guarantees as you realise and there are difficult times.But personally I think the fun they provide for one another and us as parents outweighs the difficulties.everybody's situation is different though and I couldn't possibly advise you one way or the other,just so long as you are going into it with your eyes open.good luck with whatever you decide.

How old is your daughter?