Pregnancy after having a special needs child

[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

 

[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

 

[purplerat]

Thanks Kelzyboo x

 

[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.

 

[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

 

[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.

 

[Lottie86]

Awwww congratulations

 

[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.

 

[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.

 

[LunaBean]

Congrats Caezzybe!

 

[kelzyboo]

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

 

[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.

 

[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 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 Congrats to you all, and who knows maybe soon i can join you in here

 

[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

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.

 

[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.

 

[Peanut78]

Lottie, I am so sorry you have received bad news

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. 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

 

[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.

 

[Peanut78]

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.

 

[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

 

[Peanut78]

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

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" .
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...