# Pregnancy after having a special needs child



## Caezzybe

I've noticed that at least 3 of us on here with special needs children are currently pregnant. Firstly, congratulations! :) How are you feeling about pregnancy after having a special needs baby? I'm over the moon, but also a little scared. There's no reason in my case that baby number 2 should have the same condition as baby number 1 (except for my age), but I think that when it comes to the 12 week scan I'll be very nervous. I won't be having amnio or CVS, but will have the nuchal fold and blood tests to assess the likelihood of whether the baby has a heart condition and for no other reason. I will also be asking what the statistical results would have been had I not had a child with Down's Syndrome last time.

I won't be having the scan for another 8 weeks yet, but will probably get more nervous nearer the time. Does anyone else have any thoughts to share about how you feel or felt during your pregnancy after a special needs baby (or if you had any experiences that you feel others could benefit from?)


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## capel

I am 8 weeks pregnant and my first daugther was brain damaged during birth. I am very scared this time round. 

The first pregnancy was perfect untill the last minute when everything went wrong. This time I am not as healthy as before. I am now tipe 1 diabetic, making this pregnancy high risk. 

The likehood of miscarrieges and birth defect are 10x higher now. And to complicate matters I had the flu (what causes mayhem with diabetes control)

At the moment I am in a place where I have to choose between my weelbeing or the baby's weelbeing. At the moment I am putting the baby first, but that is causing havoc in my body. Two weeks off work at the moment. 

But I am trying to be hopeful. My consultant is pleased with my progress and I had a scan at 6 weeks that picked up a hertbeat. 

Know lots of people with disable children that had other children after and noone had another disebled child. And I know many mums from the special school my daughter attends. I think about every other child there has a non disabled sibling.

So I am trying to thing that a lightening doesn't strike in the same place twice...


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## Lottie86

I'm absolutely _terrified_ as I have a 1 in 2 chance of this baby also having the chromosome abnormality that Findlay has. I haven't had a cvs done but my OH desperately wants me to have the amnio done so we know if this one is also affected (although even if results seem ok they will have to do a blood test on the baby when its born to check that it def doesn't have it)

Add to that the fact I have a high risk of things like prem labour, placental probs, miscarriage, stillbirth and iugr due to an autoimmune condition I have and I am going to be spending this pregnancy very nervously.


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## xLisax

:wave: Hello Ladies! :flow:

We've got a 1 in 4 chance of this baby having CF, Im so nervous and scared its unreal.

Ive got my CVS next week, which also scares the bejesus outta me :wacko: We wouldnt be able to continue the pregnancy if the baby did have CF..it would cause more health problems for my son and this baby. Lower life expectancy etc. :( Im so scared.

Im just keeping everything crossed and keeping positive..and hoping that the man upstairs is kind on us :)

xx


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## MrsRabbit

After how awful DS' newborn period was I was NOT looking forward to another newborn. Ever. All the crying, the year I never slept, the crying...yeah. We got pregnant with DD by accident - birth control - didn't work. 

Then with DD - I went into labor at 26 weeks, pelvic rest, labor again at 27 weeks I began dilating. Full best rest from 27-39 weeks - only to be induced. 

DD's birth was awesome. DD's newborn period - although difficult with pumping since she wouldn't nurse and her medical issues since she didn't cry 6+ hours a day it felt a lot more sane.
Then her screening came back for CF and the scare with that. Learning she's a carrier.

The idea of having another baby like our first 2 or a baby with CF is scary.


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## midori1999

This is my fourth pregnancy since I had my third son, who has Downs. He is my last surviving child though. 

I was told (by different doctors) that screening tests would be a bit of a waste of time in my case, although that as after I declined them. (hilarious really, it was a waste of time the first time! :haha: ) I was offered an amnio straight away (as was my friend in a different health authority during her pregnancy after her daughter was born with Downs). I declined that too. 

The way I see it, any serious heart or physical problems will show up at my 20 week scan and regardless of thst I would never choose to terminate anyway, so whatever happens we'll deal with it. 

There are so many conditons that cannot be determined by antenatal testing, such as autism, I'm just not going to worry about it. Plus, I have far worse things to worry about this pregnancy.


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## Annunakian

My ds isn't as sever as some of these ladies's children but it still terrifies me going through everything we went through with him. I explain it as it was colic that he never grew out of. It was very hard to deal with and it is an every day struggle still. This pregnancy was a total surprise. Not trying, sort of preventing and BAM. So it scares me a bit of the idea of having another adhd/impulsive/etc child. She'll be my princess regardless but it's still scary.


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## Newt

We knew nothing about Oscars autism until he was nearly two, and you cannot screen for it. i am an older mum and will refuse and amnio if offered or eve if there was a test to screan for autism, I would not terminate if anything was found and what will be will be. I am not really worried, no point, will cross that bridge if we get to it :)


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## Tegans Mama

I'm not pregnant now but I have been (twice) in the very near past. I won't have genetic testing done and I won't terminate if there are problems. I will be very pregnant when (if???) I ever have another pregnancy that progresses normally.


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## Emmea12uk

Hi everyone and congrats! I am 15 weeks with bump three after a mmc and a child with spina bifida/ hydrocephalus. I have got this far without too much stress but it is starting to mount up now. 

The worse thing is using the same hospital and waiting rooms as those I used with Tom. When I had my 12 week scan it was like being there and being told Tom had sb all over again. I was traumatized all over again. Thankfully I told fetal med and they have agreed to keep me away from those rooms for my future scans.

I have a high chance of another with sb so I am nervous, but I took part in a clinical trial to help prevent it. 

I will not be having any other testing other than scans.

The biggest weight on my mind right now is birth. I font want to go through that trauma again - it was a nightmare. I want to stay the heck away from hospitals, but it looks like I won't have a choice:(

I hope everyone else has a happy healthy pregnancy!


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## kelzyboo

:hugs: to everyone, i hope you have happy healthy pregnancies....and happy babies whatever the outcome x

I worry more about coping with my daughters Autism with a newborn baby rather than having another child with autism to be honest, bump has a different father so i'm hoping this one doesn't but i will learn to cope if he has, same as i have with my little girl.

It's not easy, shes very demanding but shes worth all the exhaustion! 

There is no way to know if LO is Autistic before birth so all i can do is wait, hopefully having now expirienced it i will spot the symptoms far earlier than with Abbie!

All i can know right now is that i love my little angel and my bump and it doesn't matter what challanges i have to face, i will face them with my children and thats what counts, i couldn't be prouder of Abbie, her Autism is just a tiny part of her wonderful personality!

:flower:


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## mom22boys

I am not pregnant but I am trying. I have a 9 1/2 year old with Down Syndrome. I must say that he was a blessing and will always be. It has taken us this long to get up the courage to try for another. The leaving him at the hospital as a newborn was awful. We almost lost him at 3 years old. Many nights spent in the hospital. I had him when I was 24 years old. Now being 34, when I get pregnant I will not do the amnio (I have already been told that they would want me too). I really do not worry about having another child with Down Syndrome. I do think having one special kid makes you more aware of all the things that could go wrong.


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## kelzyboo

I'm glad you've found the courage to try, just wanted to send you lots of :dust: xx


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## smileylexie

Hi guys, 

I'm currently pregnant with my second child after having a little girl with downs syndrome, i've decided not to have any tests as i feel 'what will be will be'. I don't have any grudges towards people who choose to have the tests done it's just my personal morals after having maisie. In some sense it scares me to think of having two children under the age of 4 with DS however i also weigh up my chances as i'm 25 and so aren't in the high risk category. I feel that if however it is in my cards to have another one with DS i'll love the baby just as much as if it didn't have the syndrome!


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## Emmylou27

Firstly, congrats to all you guys who are expecting! :happydance::happydance:

My first, Daisy who is nearly two now has Spina Bifida and Hydrocephalus - unbelieveably, no problems were detected prior to birth in scans etc! She is doing incrediably well though and seems to be amazing everyone with her progress. :thumbup:

Alfie, who was born last October was always planned and is 100% healthy. Yes, the extra tests and scans we had were scary as hell and I still didn't believe the consultants etc. that he was ok until he was born - the first question I asked after he had arrived was to check his back was ok! 

Just wanted to try and offer some sort of positive vibes out there - everything birth wise etc. was completely different with Alfie and just because you have one child with special needs it doesn't mean history is going to repeat itself.

Huge :hugs: to you all x


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## xLisax

I just wanted to update on me if thats ok?

We've had our results from CVS back and bubs hasnt got Cystic Fibrosis and isnt even a carrier of the gene! :cry: <--happy tears! I feel so lucky and blessed and am just so appreciative :) 

Its so nice to have ladies to talk to about things on here, BNB really is so supportive :hugs:

I wanted to wish all of you the very best, and healthy and happy pregnancies :hugs:

xxx


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## smileylexie

So glad for you that your unborn is healthy and isn't a carrier :hugs:

hope the rest of your pregnancy goes well!


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## xLisax

Thank you so much SL :hugs: :hugs: 

You're almost halfway now! :) Do you find your second pregnancy is going quicker than your 1st? My 1st seemed to go sooo slow! 

xx


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## Emmea12uk

Yay Lisa!!!!

I just had my first anomaly scan and no sign of spina bifida yet! Yay.

This one is going much quicker!

I hope everyone's pregnancy is going well!


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## xLisax

Thank you Emmea! :flower: 

Amazing news on the anamoly scan!! :hugs: 

I cant get over the speed the weeks are going, everyone told me that pregnancy number 2 goes quickly..I never believed them though! :haha:

xxx


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## smileylexie

xLisax said:


> Thank you so much SL :hugs: :hugs:
> 
> You're almost halfway now! :) Do you find your second pregnancy is going quicker than your 1st? My 1st seemed to go sooo slow!
> 
> xx


I think with my second time's whizzing by, certainly the worry / uncertainty as to whether this LO will have downs makes it go so quicker!

Also having to run around after maddam everyday is so tiring!! her favourite thing to do at the moment is to empty things, cupboards, bowls of food etc i'm forever busy i sometimes forget that there's another one in there :dohh:


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## Lottie86

Emmea12uk said:


> I just had my first anomaly scan and no sign of spina bifida yet! Yay.

Brilliant news :thumbup: Will you have to have several more anomaly scans throughout the rest of the pregnancy?


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## Emmylou27

Emmea12uk said:


> Yay Lisa!!!!
> 
> I just had my first anomaly scan and no sign of spina bifida yet! Yay.
> 
> This one is going much quicker!
> 
> I hope everyone's pregnancy is going well!

Emma - that's fantastic news! All will be good, you'll see. Have you had the triple test results back yet? 

Are you going to find / have you found out what you're having this time?

:hugs:


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## Emmea12uk

Lottie86 said:


> Emmea12uk said:
> 
> 
> I just had my first anomaly scan and no sign of spina bifida yet! Yay.
> 
> Brilliant news :thumbup: Will you have to have several more anomaly scans throughout the rest of the pregnancy?Click to expand...

Thank you. I have one more at nearly 20 weeks. Then I will have a private one at 25 I think.


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## Emmea12uk

Emmylou27 said:


> Emmea12uk said:
> 
> 
> Yay Lisa!!!!
> 
> I just had my first anomaly scan and no sign of spina bifida yet! Yay.
> 
> This one is going much quicker!
> 
> I hope everyone's pregnancy is going well!
> 
> Emma - that's fantastic news! All will be good, you'll see. Have you had the triple test results back yet?
> 
> Are you going to find / have you found out what you're having this time?
> 
> :hugs:Click to expand...

No I didn't have any tests, not even nt scan as I don't want to worry about stupid percentages and risks. I would never have an amnio so there is no sense in knowing before birth. I would just freak out for no reason. What will be will be!

I will find out if it is a girl or boy - they wouldn't tell me this time so I think it is a girl.


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## Emmylou27

Emmea12uk said:


> No I didn't have any tests, not even nt scan as I don't want to worry about stupid percentages and risks. I would never have an amnio so there is no sense in knowing before birth. I would just freak out for no reason. What will be will be!

Can see where you're coming from. They didn't offer me the triple test with Daisy but I had it this time round and although the Spina Bifida risk was 'low' I then started to panic about the other odds. :dohh:

Hope it all goes well for you. x


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## Caezzybe

Bad news for me, I'm afraid :( My pregnancy was lost on Friday at 6+5, I've got an appointment with the GP on Thursday and will ask some questions then but the hospital staff said there won't be a chromosomal investigation as this is "only" my second miscarriage (obviously the fact I also have a T21 baby boy doesn't count) :cry:


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## Lottie86

I'm so so sorry :hugs::hugs:


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## xLisax

So, so sorry to hear that :( :hugs: :hugs: :hugs: xxxxx


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## smileylexie

So sorry to hear of your loss hun xxxxx


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## Emmea12uk

Emmylou27 said:


> Emmea12uk said:
> 
> 
> No I didn't have any tests, not even nt scan as I don't want to worry about stupid percentages and risks. I would never have an amnio so there is no sense in knowing before birth. I would just freak out for no reason. What will be will be!
> 
> Can see where you're coming from. They didn't offer me the triple test with Daisy but I had it this time round and although the Spina Bifida risk was 'low' I then started to panic about the other odds. :dohh:
> 
> Hope it all goes well for you. xClick to expand...

I am suprised at that - I thought mine would be high based on previous history alone!


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## Emmea12uk

I am so sorry for your loss caezzybe:( it is so frustrating and heartless that they won't even try to give us answers - when I loss my last they wouldn't even entertain it. I was convinced it was another ntd. 

:hugs:


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## Emmylou27

Emmea12uk said:


> I am suprised at that - I thought mine would be high based on previous history alone!

I know, it's weird. I can't remember the exact levels cos they're not on the letter but the midwife told me that, for example, they worry about anything over '2.5' and my reading was '0.5' - something like that.

To be honest though, I could have had all the tests in the world (I think I did have!) but until I actually had Alfie in my arms I didn't fully believe all would be ok.


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## Emmea12uk

No - I don't think I will believe it until I get to hold her!him unlike last time.


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## Newt

gosh what a mixed thred of happy news and sad. sending love to you all.
I am not reallyup for having tests, I know it wont make any difference to how I feel about bubba, eve though I am older, so i feel what will be will be, iykwim. :hugs:


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## Adanma

oh caezzy I'm sorry! You're in my prayers. It's such an emotional thing to go through I feel for you and family.

AFM: When I was preg with 2nd boy we didn't have Ian's diagnosis yet. The last pregnancy which I lost and this one and while ttc, people have been asking if I'm worried I'll have another kid on the spectrum. No I'm not. If God thinks I'm strong enough to be a good mom to two kids on the spectrum and a NT child then I believe I can too. I think my friends worry more than me because they see the challenges a lot and hear about them, but not so much the wonderful cherished moments. I think people tend to talk and vent about negative things more than good (myself included) so I guess I can see how someone could think it would be impossible to have more than one.

I also think that when I do talk about the wonderful things like Ian becoming more social it just seems like a normal thing to my friends with NT kids so it's not really noteworthy to them you know what I mean? So me gushing about Ian calling a kid in his class a friend doesn't register as special to them where as me talking about the meltdown from hell in the grocery store is noteworthy.

Anyway long winded sorry. Short answer: nope not worried! 

Adanma


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## kelzyboo

I'm glad your not worried Adanma and huge congratulations on your pregnancy!

I agree we tend to vent our frustrations to other people (we have to vent somewhere, right?), so thats kinda all they see, they don't see the good stuff and the fantastic moments we have with our children (and there are so many of them) and even if they saw it, it wouldn't mean much to them unless they had an as child! Like when my daughter walked up to me and said 'i love you' followed by a big kiss, others take that for granted where as we know how special it is because it doesn't happen very often, the good things far outweigh the bad!

I'm not worried either, whatever happens is ok with me and somehow i will cope!

Abbie's taken to giving my belly a kiss occaisionally and i love it, i do think i get a little more affection from her than most as parents i've spoken to, if i have another child with as then i will handle it as i have handled it this time, it could be so much worse and i'm grateful for my healthy child, extra needs are just that, extra needs xx


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## Newdreemz

kelzyboo said:


> :hugs: to everyone, i hope you have happy healthy pregnancies....and happy babies whatever the outcome x
> 
> I worry more about coping with my daughters Autism with a newborn baby rather than having another child with autism to be honest, bump has a different father so i'm hoping this one doesn't but i will learn to cope if he has, same as i have with my little girl.
> 
> It's not easy, shes very demanding but shes worth all the exhaustion!
> 
> There is no way to know if LO is Autistic before birth so all i can do is wait, hopefully having now expirienced it i will spot the symptoms far earlier than with Abbie!
> 
> All i can know right now is that i love my little angel and my bump and it doesn't matter what challanges i have to face, i will face them with my children and thats what counts, i couldn't be prouder of Abbie, her Autism is just a tiny part of her wonderful personality!
> 
> :flower:

Were in the same boat! I have a son who is 3 years old with autism, and I don't necessarily worry about this one being diagnosed with the same condition..just worried about how much attention my son will need while taking care of a newborn. My son is so exhausting as well. But I think once you get the hang of it, We'll be okay! lol


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## kelzyboo

I think your right Dreemz, we just have to work out our own routines and we will cope just fine, we have to make it work for our own families needs the routines may not be as conventional as some peoples but hey, the things we deal with every day i'm sure we can make it work!

My only plan is to involve her as much as she will allow me to and back off when she wants me to lol The truth is she will make a fantastic big sister and your son a big brother and we will find our own ways of working things out!

Lol i probably won't be so confident in a few months time :blush: x


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## Newdreemz

kelzyboo said:


> I think your right Dreemz, we just have to work out our own routines and we will cope just fine, we have to make it work for our own families needs the routines may not be as conventional as some peoples but hey, the things we deal with every day i'm sure we can make it work!
> 
> My only plan is to involve her as much as she will allow me to and back off when she wants me to lol The truth is she will make a fantastic big sister and your son a big brother and we will find our own ways of working things out!
> 
> Lol i probably won't be so confident in a few months time :blush: x

Girl i know! Lol. Lets cherish these precious moments of sleep while we can!


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## purplerat

I worry a lot that another child I have will also have ARPKD and Hyper Insulinism. My son needs a kidney transplant next year at just 3, so I am very worried about him. We spend a lot of time at hopsital and had such a traumatic first few weeks with him. It will take me a long time to want to try and go through it all again. I have a 1 in 4 chance of another child with those conditions. x


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## kelzyboo

He's a beautiful little boy purplerat! I can understand your worries about trying again and i'm sure you'll find the best time for you and your family. Hope all goes well with his transplant xxx


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## purplerat

Thanks Kelzyboo :hugs: x


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## Sweet_Alida

I have a daughter with a Rare Lung Disease. It's not a Terminal condition, but there is not a lot known about it either. They don't believe it is Hereditary but there are a handful of siblings that have been diagnosed with it so it is possible to have 2 kids with the same disease. They believe it is a spontaneous mutation, but I have my doubts. We are expecting #2 and praying for a healthy baby this go round, but like so many have said God knows what we can handle and if we are blessed with another special needs child then we will learn to handle it. I am still trying to figure out how I am going to carry oxygen and a newborn and wrangle a toddler, much less if the newborn needs oxygen too! but we will manage and hopefully sooner than Later Alida will be coming off her oxygen(probably not for another 3 years but I can hope!). Good Luck everyone! And yes I am worried, but I will handle whatever God chooses to give me.


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## kelzyboo

Major congratulations Sweet_Alida, i remember you from TTC so pleased you got your BFP!!

Its natural to worry and i don't really know much about your situation or your daughters needs but you've got a beautiful little girl there, i know that. Can't really offer advice but i'm sure whatever happens you and your family will cope as you have with your little girl, plus the fact that they believe its a spontaneous mutation is a good thing...chances are your LO will be fine, i certainly hope so.

I wish you and your family a happy and healthy 9 months, congrats again and enjoy your pregnancy i'm sure everything will be fine whatever happens xx


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## Sweet_Alida

Thank you so much! We are a little shocked still, to be honest never thought we had a chance of having number 2, but I guess God wanted us to give Alida a sibling! We are taking one day at a time. I was worried about all of this when TTC but it didn't really hit me until now! But I'm sure everything will be fine. Thanks again.


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## Lottie86

Awwww congratulations :D


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## 9babiesgone

My first child is special needs, but I am not too worried bc that doesnt mean all of mine will be. My son wasnt and he is my 2nd child.


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## Caezzybe

I'm (nervously) back again :) After my mc on 28th Jan I got my BFP on Sunday last week and am 5 weeks tomorrow! After 2 miscarriages and a T21 baby, I'm worried about this one and will be up until 12 weeks. As I've never had a "normal" baby in 3 previous pregnancies, I'm more than a bit concerned.


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## LunaBean

Congrats Caezzybe!


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## kelzyboo

Congratulations Caezzybe, crossing my fingers you have a happy and healthy pregnancy xx


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## Misty

Hi everyone :)

I am expecting a baby boy who we already know has cystic fibrosis. I feel scared, but prepared.

I have three boys already. The youngest also has CF. I have also lost 2 babies since we had him. The first I lost to a ruptured ectopic pregnancy, and the second we had to make the terrible decision to let go and end the prenancy. She had Trisomy 13, Patau Syndrome. There was no chance she would have lived beyond a few painful days or weeks. :(

After the decision we made in our last pregnancy, there was no way I could do that again. It still tears me up inside. She didn't have CF (she had the same 1 in 4 chance), she wasn't even a carrier. 

It seems so unfair that we have to go through so much. Sending much love and ((((hugs)))) to all the expectant mums out there. Let's hope all our children, special needs or not, are happy. :)


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## baby.love

Hiya girls

I so wish this thread was here when i was pregnant with Sienna! and i certainly hope its here if we are blessed with another.

My gorgeous boy Ethan has moderate ASD, life is a day to day struggle with lots of ups and downs... But i wouldnt change him for the world :cloud9: He also has sensory issues, but we are dealing with those 1 at a time and finding ways to help Ethan.
We know its not hereditary in ours/Ethans case as he had blood tests done last year and all was perfectly fine! And the Drs said its nearly always the case.

Both my girls are fine with no ASD, although i still worry with Sienna.. even though she is a perfectly 'normal' (i hate that word) 18 month old.

Any way, sorry for gatecrashing :blush: Congrats to you all, and who knows maybe soon i can join you in here :flower:


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## Lottie86

Just thought I'd update and let you know that we got the amnio results back a week ago and Miss Bumpity does have the same very rare chromosome abnormality that Findlay has. We are absolutely devastated :cry::cry: 

Her growth is very behind (including her head which isn't a good sign) plus her fluid levels are already not brilliant and she's recently started making weird movements which the gp has said to mention to the consultant as the only thing the gp can think of is that Miss Bumpity has started having seizures (my son has epilepsy as a result of the chromosome abnormality so this is a very real possibility :() 

We're off to speak to the consultant next week to discuss what happens from here.


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## Emmea12uk

I am so sorry lottie and misty:( it is so unfair that you too have been through so much to have to face it all again. You must be such strong woman and I hope you continue to find the strength to see you through so you can enjoy the good times and precious moments they bring. :hugs:


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## Peanut78

Lottie, I am so sorry you have received bad news :hugs:

We found out just over a month ago that our son has "dysmyelination" (parts of the the white matter of his brain has not coated with myelin - which essentially acts as the rubber around a wire ensuring messages are transmitted from one part of his brain to the other mainly affecting motor skills). He is currently being tested to see if he has a "demyelinating" condition (unlikely and worst case scenario - where the myelin is actually disappearing from the white matter, rather than a delay in the development of myelin). 

I am currently pregnant with our second child. So far there doesn't seem to be consensus as to whether "dysmyelination" is genetic or not. Our paediatric neurologist seems to think it is, but a genetic counsellor I spoke to briefly doesn't believe this is likely. :shrug: We won't know until our second child reaches between 1-3 years old if they also have this as that is when "dysmyelination" may be verified on an MRI - although if we see a delay in his development it may be an indicator. 

Pretty nerveracking stuff :nope:


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## Emmea12uk

Hi again peanut - from what I have seen the main condition where mylin is broken down by fatty acids is genetic but can be detected before birth. Also, a new vaccine is available to prevent dymylination leading to altzimers. There is a Facebook group by an organization called the mylin project. It is a charity set up by an amazing man whose son had the worst demylination disease and he gave up everything to find the answer to prevent further demylination and he succeeded. He is now looking in to how to repair mylin.

I hope that helps! If nothing you might find some people to support you.


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## Peanut78

Emmea12uk said:


> Hi again peanut - from what I have seen the main condition where mylin is broken down by fatty acids is genetic but can be detected before birth. Also, a new vaccine is available to prevent dymylination leading to altzimers. There is a Facebook group by an organization called the mylin project. It is a charity set up by an amazing man whose son had the worst demylination disease and he gave up everything to find the answer to prevent further demylination and he succeeded. He is now looking in to how to repair mylin.
> 
> I hope that helps! If nothing you might find some people to support you.

Hi Emma, thanks a million for all the info! 

I did have a look at the "myelin project", which will be even more relevant for us if our son does have a "demyelinating" disorder, at this stage they believe (until tests prove otherwise) that he has "dysmylination" which would mean it is a delay in developmeht of myelin, rather than a break-down of it (this apparently, is not as straight fwd in terms of genetics). There is also some (very limited) evidence that stem cells may help in promoting growth of myelin - we will definitly be looking into that through stem cell storage.

I have so much to learn, and all advice is very welcome!!! Already I have learned so many new things about the brain and it's abilities (especially in early childhood) - pretty amazing. I am just thankful that we are in a position to receive early intervention and support. :thumbup: 

:kiss::kiss::kiss:


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## Emmea12uk

Will you be able to harvest stem cells from this babies cord and use them if they think it will help? That is so clever and interesting


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## Peanut78

Emmea12uk said:


> Will you be able to harvest stem cells from this babies cord and use them if they think it will help? That is so clever and interesting

Yeah, that's the idea. there is limted experience with this, but certainly some evidence that it can help in some instances :thumbup:

We are kinda kicking ourselves now, because we had every intention of storing our first son's stem cells from the cord, and then last minute literally "never got round to making necessary arrangements" :cry:. 
Still there is a 75% chance the sibling could be a match. In any case at this stage, I want to store our second child's stem cells, as one thing I have learned is how unpredicatable the future can be! Maybe his brother can use them, or maybe (God forbid) he will need them himself one day... :shrug:


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## Emmea12uk

I wish you the best of luck with that. It is fascinating what stem cell technology there is. I really hope your new bubba doesn't have any problems.


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## Caezzybe

Lottie86 said:


> Just thought I'd update and let you know that we got the amnio results back a week ago and Miss Bumpity does have the same very rare chromosome abnormality that Findlay has. We are absolutely devastated :cry::cry:

Oh Lottie, I am so sorry to hear your news :( Huge hugs to you, I will be thinking of you xxx


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## DanielleM

I am not pregnant at the minute, had my son in January but when I was pregnant I was not worried at all, it was like I shut down that part of my brain. But no he is born I am like a paranoid freak, I think all sorts are wrong with him, my doctor must think I am going round the twist!! Jacob is now 3 months and seems to be perfect with his muscle tone and head control, but it still doesn't help with all the thoughts going through my head if he ends up with a disability, I wonder how I will cope with 2 disabled children? Hope all of you have a healthy and happy pregnancies with healthy LO!!! xx


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## Caezzybe

I have an update. I had my 12 week scan last week and the nuchal fold was 1.4mm. Today I got my full results back (including from the blood tests) and my risk is 1 in 760, not bad for a 42 year old! I know Logan was a false negative for Down's Syndrome with 1 in 560, but I reckon the chances of lightning striking twice with 2 false negatives must be minimal? The baby's head looked a completely different shape than Logan's at 12 weeks, much rounder at the back (Logan has brachycephaly as do most babies with DS) and has a more pronounced facial profile. Baby number 2 also clearly has a nasal bone.

The hospital midwife asked me twice if I want invasive testing and I said no both times, she looked at me like I had two heads for saying no but there is no way I would terminate if the outcome was positive for DS anyway. The hospital I am under are taking part in the pilot study for the new non-invasive testing, but won't test my blood as I'm not having amnio or CVS and they apparently need something to compare the results against.


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## LunaBean

Anymore pics/vids of the wee man? How cheeky of that nurse, kinda expecting you to have the test done! I dont want any done, cus I wudnt terminate either


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## Lottie86

My update is that Miss Bumpity will be arriving via planned csection next Thursday morning at 34 weeks. She is symmetrically absolutely tiny for her gestation and yesterday's growth scan (am on weekly doppler scans, fortnightly growth scans and ctgs every other day to keep a very close eye on her) showed she's currently measuring around 5 and a half weeks behind and her fluid level is really low too at 2.8. Just need to keep our fingers crossed there is an intensive care bed free for her as she's not going to be like a 'standard' 34 weeker due to the trisomy so she'll prob spend a fair few weeks in hospital. 
I nearly ended up staying in hospital last night and depending on how things go today I may end up back in again (they're querying if I have a small abruption starting) so there's a chance she may be delivered before next week.


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## Emmea12uk

:hugs: you poor thing. I really hope she holds on the week and that you are ok.


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## dizzybella

my gorgeous nearly 2 yr old has Downs and im due my next one in 4wks, 6 days (not that im counting...;-) We didnt get this wee one tested altho i hav battled back and forth about a 3d scan- but i decided that it wudnt make a diff anyway so i'l just wait and see. Shes measuring a bit small which has worried me but i just hav to remember that not everythin is associated wit DS. I admit i'l b upset if she has ds but only cus i worry about her health and how my hubby will cope. but no matter wat she'll be loved and we'll do our best. think my hormones are just gettin to me and makin me fret cus i know logically that as soon as shes here i'll be a happy mummy no matter wat.


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## Lottie86

I ended up back in hospital yesterday as the contractions weren't stopping and I'll be here until my csection next week so they can keep me dosed up on strong painkillers and give me a sleeping tablet each night so I can try and get a few hours dozing in amongst the pain. My ctg looks like a mountain range! :wacko:


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## Newdreemz

Lottie86 said:


> I ended up back in hospital yesterday as the contractions weren't stopping and I'll be here until my csection next week so they can keep me dosed up on strong painkillers and give me a sleeping tablet each night so I can try and get a few hours dozing in amongst the pain. My ctg looks like a mountain range! :wacko:

Been awhile since I checked this thread. I hope your doing okay! :hugs:


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## Peanut78

Lottie, I hope everything goes well and bumpity is delivered safely :hugs:

Dizzybella, good luck with your baba's arrival in 4 weeks time :hugs:

We received our son's test results for regeressive, degenerative "demyelinating" conditions last week - all negative :happydance:

At this stage we are hoping his dysmyelination comes down to a delayed structural growth rather than a permanent absence. Only time will tell, we should know more by 3-4 years age. In the meantime he is making lots of progress and picking up new skills every week :cloud9:

As this new baby's birth draws near I have found myself worrying more about whether he may have the same issues, but it will be at least 8 months before we would be able to begin to assess that, so I need to find a way of letting it go somehow. I guess the advantage of having been through this once is knowing what the warning signs would look like. I just don't want to find myself assessing the new child's every move either... :dohh:


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## Floridasun

I ttc with second child at the moment. My son has Aspergers, so i'm not so worried about this child having the same. I'm more worried about how my son will cope with a new baby. He doesn't like babies now, there to unpredicatable for him. I'm hoping a brother or sister for him would be different. It is a worry though


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## Newdreemz

Floridasun said:


> I ttc with second child at the moment. My son has Aspergers, so i'm not so worried about this child having the same. I'm more worried about how my son will cope with a new baby. He doesn't like babies now, there to unpredicatable for him. I'm hoping a brother or sister for him would be different. It is a worry though

I understand. My 3 year old son has aspergers, and he has a big sister who he looks up too. So it was the other way around. It was hard for her to get used to HIM. She was so jealous! but now she enjoys him so much. But now I'm expecting a baby next week and my last concern is if this baby will be autistic. I'm more worried about my son being able to deal with someone stealing his spotlight! At the same time I do think they will get used to it! New babies are always hard for the other children to accept. I think as long as you give him his individualized attention, and involve him in helping like letting him hand you a diaper to help, he'll get used to it. but no doubt the first month or two is going to be the WORST!


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## Caezzybe

Lottie, wishing you all the best and hoping that Miss Bumpity has a safe delivery. Huge hugs to you xxx

Dizzybella, here's keeping my fingers crossed that everything goes well, by the same stage in my pregnancy I'll probably be nervous too xx were you offered any extra scans? I'm having a fetal echocardiogram done as Logan has an ASD.


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## Mummy2Boo

What a mixed thread..... :hugs: all round. 

My son has a very rare genetic condition, so rare his geneticist hasn't ever seen it before. We're currently going through tests to see if they can identify the mutation to enable us to have IVF with PGD, otherwise we have a 1 in 4 chance of passing the condition again. On top of his condition, he also has severe HMS and an IgA deficiency to throw into the mix, both of which could also be passed along but those are 'easy' to cope with by comparison. It's also been suggested that he may have an ASD but again, we can deal with that. 

If we can't have IVF PGD then we'll most likelt decline any invasive screening. We did the same with our son - I have the triple bloods and a NT scan. I had chicken pox early on and if passed to a developing baby can cause blindness and deafness so we continued knowing we were high risk but we could cope.


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## dizzybella

Caezzybe said:


> Lottie, wishing you all the best and hoping that Miss Bumpity has a safe delivery. Huge hugs to you xxx
> 
> Dizzybella, here's keeping my fingers crossed that everything goes well, by the same stage in my pregnancy I'll probably be nervous too xx were you offered any extra scans? I'm having a fetal echocardiogram done as Logan has an ASD.

i've been scanned every 2-4 weeks so theyre keepin a close eye on her thankfully  i love the name Logan!! Thats one i hadnt come across wen we thot this wee one was a boy...have to bear that one in mind for the next one lol!! At which my hubby is near havin a fit- apparently the last 8months have been hell for him and i'm not allowed anymore after Callie arrives :haha: We'll see who wins that argument...:winkwink: Hope ur lookin after urself - i think its easy to fret and worry about our bumps and forget to look after ourselves!! Wee treats do us good and keep our heads in a positive place xx


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## Nathyrra

Hey guys,

Just found out a few days ago I'm pregnant. I'm very scared. Our son was diagnosed with Down Syndrome at birth and it was an absolutely awful time for us. Not quite sure how the pregnancy happened, as I have pcos, endometriosis, one ovary, hypothyroidism and a progesterone defiency! My son was conceived with assisted medical help. Truly a miracle. I battled alot of demons with my son with blaming myself and my fertility problems on his condition, so I'm currently just extremely nervous how this pregnancy pans out. 

We have talked about it before, and have decided we will be doing an amnio when the time comes. As my son had absolutely no markers during pregnancy I'm much too nervous to carry to term with the not knowing again.


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## Caezzybe

I was just wondering how everybody's pregnancies are going, has anyone had their baby yet?

I'm 20 weeks tomorrow and things appear to be going well apart from gestational diabetes. I have my 20 week scan next week and a precautionary fetal echocardiogram at Guy's Hospital the week after. As Logan had undetected Down's Syndrome and a small ASD, it was felt that the echocardiogram was justified to make sure things are OK with baby number 2 :)

I don't think I'll be entirely convinced that the baby I am carrying is OK until he or she is born and I can see for myself that he/she is unaffected by any issues.


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## Lottie86

I had my baby 4.5wks ago via emergency csection due to fetal distress. Iona is doing much much better than she was (she was on a ventilator for most of her first week, had a pneumothorax and we were told the morning after she was born that the next few days would be critical but it turns out she's a real fighter like Findlay). She's still in hospital and absolutely no idea how much longer we'll be in for but It's likely to be quite some time. 

Her growth probs are ongoing and to get her to put on weight she's on preterm fortifier to add extra protein, fat, vitamins etc to her milk and also Duocal to add even more fat and calories to her feed. Even with all that she's not exactly piling it on although at least she's gaining something.

SALT and Physio are already involved with her. SALT are reviewing her daily during the week but have said at the mo she can only be tube fed as she's at risk of aspirating if they tried her with a breast or bottle but hopefully it won't be too long before we can try her breastfeeding or with a bottle. 

Hope everyone is feeling well xx


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## 9babiesgone

My first is special needs, and when I got pregnant with my 2nd I was so scared, I would have another one, bc I didnt want my kids to struggle, I Love my first so so much, and wouldnt change her for the world, but it is hard on her, to be different than other kids. so it was a bit of relief when My 2nd wasnt special needs. It is scary sometimes, but you know I love my kids equally. and the thing is just bc one of your kids has special needs, doesnt mean the 2nd or 3rd will too!! Though we lost an baby in january to edwards syndrome. : ( but anyways, that it can happen and it cant happen. so I give you all props for doing this, and hope to be joining your ranks again soon!!! we are ttc my 3rd for about 2 years now.


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