Re: Cystic Hygorma -- Poor Prenatal Diagnosis-Advice And Support

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Subject:

Re: Cystic Hygorma

Author:
Shelly

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Date Posted: 06:59:17 03/22/03 Sat
In reply to: Lisa 's message, "Cystic Hygorma" on 07:58:21 03/19/03 Wed

Hi Lisa,

Although my son had a different problem, I understand what you are going through.

When I had my first ultrasound at 30 weeks there was no fluid and the bladder and kidneys were huge. We were told this baby would die and there was nothing we could do.

My son will be 11 next month. His life has not been easy. Lots of surgeries, dialysis, kidney transplant. But he is a very happy boy!

It was hard to deal with all of the extra stuff involved in his care, but he was our first child and it just became normal for us. I had a therapist as well to talk with. I've suffered from depression my whole life and when my son was born it seemed to make things more gloomy for me.

Looking back, everything was worth it. Of course everyone wants to have a perfect healthy baby, but sometimes that just doesn't work out. Sometimes we get someone who is actually better. A baby that teaches us to value every day and take nothing for granted.

I can understand the stress about TTC for a long time too. I'm pregnant with our second child after TTC for 8 years. I'm scared to death there will be something wrong with this baby, but in my heart I know that if there is, I can deal with it.

Bryan made me a much stronger and understanding person.

There is an e-mail list I'm part of that is for parents of children with special needs. They've got kids with just about everything you can think of! Feel free to check into it. It's a great group.

http://www.our-kids.org

Take care and good luck!

Shelly

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Re: Cystic Hygorma

Author:
Moncia
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Date Posted: 07:47:13 03/22/03 Sat

Hi Lisa,

Sorry I didn't post sooner -- I hope you are still checking messages!

I just wanted to tell you that vacillating btw feeling positive and feeling dreadful is completely normal. It will probably be this way the rest of your pregnancy. I have to tell you that's in the norm for a pregnancy w/o a poor diagnosis, too -- but the diagnsosis really intensifies things.

You probably know by now if your baby has TS. I wanted to share a support group w/ you that serves women who are expecting a baby w/ TS. Even if you baby does not have TS, they may be able to give you some info about the CH. The second link is to a story written by a woman who has a daughter born with CH. They found out late in pregnancy -- not the daughter is 17 yrs old and doing very well. The article is very honest about how the CH has affected this young woman's life thus far -- I hope you'll get a chance to read it. If you want to be put in touch with the mom, you can email me and I can put you in touch, okay?

http://groups.yahoo.com/group/ts-pregnancy/

http://www.benotafraid.net/article.asp?id=14

I will be keeping you and your baby in my prayers. I hope you feel comfortable writing back and telling us how things are going! Again, sorry for the delay --- I need to check here more often.

Sincerely, MOnica

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