NEW TO IT ALL Need ADVICE MAYBE?

[lybertysmom]

I Did a triple screen test at a routine Doc appt. This is my 3rd child and I thought nothing of it till I recieved a Phone call. Now I'm going thru genetic couceling and all the fun poking and prodding they feel they need to do. The bottom line is that I have a diagnosis of DS for my unborn child. I Guess I just don't know where to go now, or what to expect. The dr's tell me from a prenatal standpoint but not a practical one. Can someone help me?Tell me whats going to happen now.

[kellyds]

I can't tell you what to expect with a prenatal diagnosis, since we didn't know Joshua would have DS until he was born. (We chose not to have any testing.) I CAN tell you he is a delightful baby who turned three months old yesterday, and I can share his website with you. Scroll WAY down to the photo gallery if you want to see more photos.

I'm sure you're floundering around, trying to decide what to think and how to feel. I'd be more concerned about possible health problems associated with Down syndrome than the Down syndrome itself. Do what you can to ensure your child's health and then ENJOY your sweet baby!

Here's Joshua's site:

www.babiesonline.com/babies/d/davenkelly/

[CC]

WELCOME TO UNO ;D ;D

CONGRATULATIONS on your New Soon To Be BUNDLE OF JOY

CC from New Jersey ~

[Valerie]

We also didn't know about the DS until after Nicholas was born. I'm sure you're feeling a little overwhelmed right now, but I can tell you we wouldn't trade our experiences with Nicholas for anything, and he is a VERY loved little boy!

I agree with Kelly, that the medical problems would be more of a worry than the DS dx. Nicholas had AV canal defect that had to be repaired, and the DS literally took a backseat to that. There are a lot of good books and sources on the internet about DS. Your best bet would probably be to read as much information as you can just so you can be prepared for any possibility. And maybe you won't have any medical problems to deal with!

Just be aware that some of the stuff you read will focus on negatives, and trust me, there are WAY MORE POSITIVES!!! ;D This is your child, first, before anything else.

[TriciaF]

Elizabeth,
Welcome and congratulations!!! We're happy you found your way here. One question though, was your diagnosis a certainty? Did you have an amnio? I ask because the genetic couseling and the triple screen are just that...screenings....not diagnostic tests. We also had an AFP come back as an indicator and went through genetic counseling and were given a 1 in 13 chance of Ds. However, nothing was definite until our son was born.

[Jessie]

Welcome and congratulations!

There will be lots of people that can help you out here.


Jessie

[momofrussell]

Well, first off, WELCOME TO UNOMAS Lybertysmom!!!

I have 3 kids, my second has DS. His name is Russell and is 7. I knew prior to birth that he was to have DS. I did have an amnio so I knew for sure.

From a practical standpoint? ENJOY the pregnancy! I don't mean to sound flip, but for me, it was ok and I just enjoyed the pregnancy like my previous pregnancy. I read books on DS and my husband and I were also on the same page, so I just went along as usual with the pregnancy.

Unless there were some added major health issues the baby has while you are pregnant, I don't see much to think or worry about. But, that is just me. We all handle things SO differently. Some, even with a child w/o DS still worry through their pregnancies, some revel in it, ect.. so it's all up to you.

The birth and baby part of it all was nothing different for me. The birth was the same, he looked just like a baby at birth, still tried to nurse him, ect... so it was all just like a typical birth for me.... he DID end up having some health issues with platelets at birth and he had to be transfered to a different hospital, but, we just dealt with that too.

I can't say you won't still grieve AFTER the birth. I was ok during the pregnancy but did grieve a bit after the birth. But, I adjusted pretty good after he came home (2 weeks in NICU) and got to experience "Russell" for a couple months. Although he has DS.. he STILL is a boy and was STILL a baby!

I am glad you came here! I too am wondering, do you have a definitive Diagnosis of DS or are you just going off the triple screen? Either way, you won't really SEE the baby until he/she is born, so, if you don't want the amnio that is ok, just know you are going to have a baby regardless!

Have you read any books? Maybe go to the library and get some books to read would be a good idea. Come here and other sites to read about who are children are? I think you are doing good asking! Like ANY child, they come with their own set of instructions, some similiar to others, some not... with and without Down Syndrome.... So, I say "Enjoy the ride!" if you can.

Hugs!

A.

[Emilysmom]

Welcome to Uno Mas!! We found out that our daughter had Down syndrome 3 weeks before she was born, after an ultrasound revealed something that generally only occurs in babies with Ds. That led to a test similar to an amnio that gave us the definitive diagnosis of Ds. During those weeks, we took advantage of the time to learn as much about Down syndrome as possible and to meet others who could help us to help Emily when she was born. I wish Uno Mas had been around back then!! (14 years ago!) We'll be happy to help you in any way we can.
Susan

[ALLISA]

Welcome To Uno Mas !

I am sure you are very overwhelmed and emotional after receving your news.....know one understands that more than us here on the board, so please feel free to ask questions and whatever.....in the meantime.....I pasted my favorite poem.,...still chokes me up now and is so wonderful.....



Welcome To Holland




by
Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved.


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...

Allisa (mom to 3 !)

[alisonzmom]

Hi,

Congratulations on your soon to be bundle of joy! I'm Barb, mom to Alison who is 25 months old w/DS and her older sisters Sarah (8) and Caitlin (14.5). I found out that Alison would have DS about 18 weeks into my pregnancy. I cannot even begin to describe the emotional rollercoaster I was on but things did settle down as I came to accept what would be. We used the time until Alison's birth to learn as much as we could about DS and the types of services that would be available to her. We told some close friends and family about the DS before Alison was born but for the most part didn't make a big deal of it. When she was born Alison was welcomed with open arms and hearts by everybody we know!!! And yes, some people did and do ask questions like "She looks a little different? Does she have DS?" especially as she's getting older, but ya know what, we tell them "Yes she does have DS, just an extra little bonus with our surpise baby."
Try to relax and enjoy the rest of your pregnancy ( yeah, I know, easier said than done!). And know that there are lots of people here who will try to answer any questions or concerns you might have.

Sending lots of prayers for a happy, healthy baby!

Barb

BTW when is this new person expected to join us?

[rickismom]

Gee, Don't feel bad if sometimes you want to grieve... but remember that right now you have the fear of what will be without the baby in arms. Formost, our children are CHILDREN and each one an individual. The advantage of knowing in advance is that you can come to the birth more prepared (mentally and physically).