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Subject: Re: cystic hygroma-hydrops any help please!!


Author:
Aimee
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Date Posted: 12:43:01 01/09/04 Fri
In reply to: joanne ritson 's message, "Re: cystic hygroma-hydrops any help please!!" on 04:25:04 01/06/04 Tue

hi there. I just found out on Jan 2nd that our baby has cystic hygroma, we got a 2nd opinion & yesterday had an ultrasound. The results were not the same now they say possibly down syndrome,because the thickness around the neck is compatible with downs. My hubby and I have decided to go ahead with amnio now because 2 tests show 2 different things. I was scheduled to have the pregnancy terminated on Jan 14th. I can't help but feel that there is nothing wrong with our baby because of what is happening but I don't want to get my hopes up either.
Somebody please write back
Aimee

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[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!!


Author:
Melanie
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Date Posted: 22:26:18 01/09/04 Fri

Hi Aimee... I hope that you are right and nothing is wrong with your baby. Sometimes that does happen.

As for cystic hygroma, it is not necessarily fatal. Here is a link on it, although you may have checked this out already:
http://www.emedicine.com/ped/topic536.htm

This site allows you to have contact with other families that have disabled children by condition:

http://www.cafamily.org.uk/Direct/c95.html

As for Down's Syndrome, the effects can be extremely mild, to severe. I know that doctors usually give the worst case scenarios.

http://www.cafamily.org.uk/Direct/d30.html

I hope these sites help.

--Melanie

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[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!!


Author:
Pat
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Date Posted: 02:13:07 01/10/04 Sat

Hi, Aimee,

I have a nephew with Down Syndrome. You can read about him here:

http://www.seghea.com/becky/down/downsindex.html

Here's another page I'd like to recommend:

http://www.nas.com/downsyn/holland.html

Having a child with Down Syndrome means that your blessing is simply very different. If you have a child with DS, you can count on having a child who will teach you and your family unconditional love. You can count on a child who will also love you unconditionally, a child who will reawaken your sense of wonder, and a child who has a mission in life. You will not necessarily have a child who is seriously mentally retarded. People with DS do think differently, no question about it. But they can be very, very bright. Too bad one of my favorite TV shows is no longer being aired: Life Goes On. The actor who plays the person with DS actually has it. He is obviously intelligent and well educated. My nephew is also very intelligent. He tested out with the language development of a five year old when he was 3 1/2. The key to helping a child with DS be as "normal" as possible is early intervention. When you go to my web site, please feel free to email my sister and pick her brain on that subject. She's a walking encyclopedia on it. So if you seek early intervention programs, pay close attention and work with them and use your own wisdom, and you insist that your child be given intellectual training first and foremost, your child will almost certainly do well.

I'm actually jealous that my sister got my nephew instead of me. :)

And Melanie is right. False diagnosis of DS is not that uncommon. If you have an abortion, you may well be aborting a normal, healthy child. Not only that, but having an abortion could make you prone to having a child prematurely in the future, and that could cause that child to have cerebral palsy! If, on the other hand, you have a baby with DS, and you can't cope, there's a waiting list of interested prospective adoptive parents. So try not to worry. Enjoy your pregnancy. Your doctor doesn't have a right to rob you of your joy.

Regardless of what happens, we'll be praying for you, and we know that God will sustain you. Your baby is depending on you for your protection, and you are the only person who can protect your baby. I urge you to protect your baby.

Hugs,

Pat

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[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!!


Author:
Jenni
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Date Posted: 07:25:44 01/10/04 Sat

Hi,

I remember when I was pregnant, my doc asked me if I wanted to get any tests done for DS or anything else. I asked her about the DS test and she said that it, as well as many other tests...including Amino (which can be risky for the fetus and sometimes mom), often have false positives. She told me how she was told that she was going to have a baby with DS, when she was younger... and she didn't even have a babyshower or anything like that. However, her child was born without it, a huge suprise to everyone.

I actually used to work with disabled children and actually think that the people with DS and Palsey are the luckist of all. As children and even adults, they are sheltered from all the stressful junk in life. The always contain a sweet naiveness. Next time you notice a disabled child, instead of focusing on her differences, look at her demeanor. I think you will find these children always smiling and giggling...they have the positive outlook on life that we "normal" people often spend a life-time looking for. Who's to say that we are the "normal" ones anyways? My life is anything but....

Peace,

Jenni

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[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!!


Author:
Monica
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Date Posted: 21:48:32 01/11/04 Sun

Hi Aimee,

Wow! I can only imagine that pins and needles doesn't even begin to describe what you are going through right now.

When is your amnio -- have you had it yet, and if so, when are you expecting the results?

The most productive thing you can do right now, in this waiting time is to take a look at the resources we've been offering. Every prenatal diagnosis is an absolute shock -- it always requires you to reorient yourself -- but none of us are really prepared to do that. That's why it's so good that you are turning to other people for help. Now what you really should do is get in touch with parents.

Here is a good start -- and check the resources page for more places to look (as well as those already mentioned by the gals who posted):

http://www.benotafraid.net/story.asp?id=24

I'll be anxious to hear what your amnio says!!

Hang in there!

Sincerely, Monica

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