bilateral choroid plexuses cyst -Trisomy 18-UPDATE

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sheri-ct
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Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Postby sheri-ct » Fri Jul 10, 2009 12:49 am

I am so sorry. That is heartbreaking news. I hope you get good news with the amino. (((((((HUGS)))))))

amanda
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Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Postby amanda » Fri Jul 10, 2009 12:38 am

Oh my - I'm so sorry - have you heard anything yet? As Trish said - did the Tylenol help? (((hugs from me too)))

lilliputianmama
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Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Postby lilliputianmama » Fri Jul 10, 2009 11:32 am

What a ride. Take it easy and I'm thinking about you!

kbunsey
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Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Postby kbunsey » Fri Jul 10, 2009 10:28 am

Oh my goodness, I am so very sorry to read your updates. Please do keep an eye on your symptoms and rest as much as you can. I am sorry and will be thinking about you and keeping you close in my heart.

trish
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Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Postby trish » Fri Jul 10, 2009 09:13 am

I am so sorry. Please do keep an eye on your symptoms. Have you taken Tylenol for your headache & did it help? (((HUGS)))

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hannahsmom
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Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Postby hannahsmom » Fri Jul 10, 2009 08:30 am

I am so sorry that you received news you didn't want to hear. Please take care of yourself and please keep us posted.

saving_grace
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Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Postby saving_grace » Mon Jul 06, 2009 02:21 pm

quote:Originally posted by Jamie W

I was not insinuating(sp) that CP and T18 are anywhere near the same thing. I was only making the point that your child is your child no matter what the diagnosis and that you love them no matter what label comes with them. ANY parent of ANY kid with special needs, no matter how good or bad the diagnosis and prognosis are, needs to be able to find others going through the same thing. It is like those struggling with PE coming here for support- you need to be able to find others who identify with your situation because they are the only ones who truly understand what you are going through.


I know you weren't saying it was anywhere near the same and I agree with everything you said in your previous post. :) I just know for me personally I would want more testing if something as severe as T18 was strongly suspected since in most cases its not "compatible with life". My 17 yr old stepson (who lives with DH and I full time) is mentally challenged and autistic. He will forever be about the age of 3 mentally and he is nonverbal. I think he's great and he lives a very full and healthy life with as much independence as safely possible. That's not the case with the majority of T18 children. My younger brother is handicapped as well which resulted from a series of unfortunate events after a car accident when he was 16. He does not live a full and healthy life now. He lives a life of suffering (seizures, tubes, meds, infections, paralysis, unable to talk, walk, feed himself, etc). He requires 24x7 care and it has drained my parent's pocket books and emotions. My parents have discussed with me in the past that they will not take any heroic measures to prolong my brother's life if he were to get seriously ill. My sister and I support them on the issue. I would not want a life of suffering like that for any of my children nor would I want my family to go through what my parents have. Everyone is different though and everyone's take on it is shaped by their own life's experiences. There is no right or wrong answer, there's only the decision you can personally live with. There are many things I know I could handle (CP, Down's, Autism, Mentally Challenged, etc) and there are things I've seen with my own two eyes that I know my family and I couldn't handle. I would want to know ahead of time if at all possible if it was T18. That's all I meant by my previous post. I hope that it makes better sense now. :)

mrsjrmiller
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Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Postby mrsjrmiller » Mon Jul 06, 2009 01:21 pm

Hi, I am responding late to your post and hope that you still see this - Obviously, I cannot tell you what your situation holds but I am really sorry that you are going through this at all. I know that you are scared and I think the internet does not help.

I was told on Thursday that I have a 2 vessel cord as well. I do not have the cysts that you spoke of though (or not that I know of at this point). I hope that your dr. can answer a lot of your questions and give you a peace of mind. So far, I know that there is fluid on my daughter's kidneys... which can be correlated to the SUA. I will be having a fetal echo to help determine if her heart has any problems. Since finding out on Thurs. I have heard several success stories of people who have had healthy babies with SUA. Although, my sister did have a SUA with her 3rd child - and she does have down syndrome. She is very healthy though, no heart problems, etc...

Keep me posted on how things turn out.

fiona
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Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Postby fiona » Thu Jul 02, 2009 03:04 am

Katia, I am so sorry for all you are going through.

Testing or not testing is one of those subjects that people do feel very strongly about - and it's a very personal decision. The only thing I would add to what has already been said, is that knowing a dx for sure is something that can help some people prepare. We never expected Nate to be so severely compromised at birth, and I have always felt that had I known I would likely only have him with me for a day or two, I would have been more aware of that time - and bonded with him before birth in a different way.

Another thing to keep in mind is that the risk associated with an amnio is very dependent on where you have it done: high risk hospitals where it is a standard procedure have extremely low rates of m/c from it. It might be worth finding out the rate associated with your particular hospital.

Whatever you decide, I hope you will feel able to seek support here.

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jamie w
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Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Postby jamie w » Wed Jul 01, 2009 10:43 pm

I was not insinuating(sp) that CP and T18 are anywhere near the same thing. I was only making the point that your child is your child no matter what the diagnosis and that you love them no matter what label comes with them. ANY parent of ANY kid with special needs, no matter how good or bad the diagnosis and prognosis are, needs to be able to find others going through the same thing. It is like those struggling with PE coming here for support- you need to be able to find others who identify with your situation because they are the only ones who truly understand what you are going through.


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