Down Syndrom Scare

My son showed that he had an echogenic bowel and when we went to have another ultrasound the doctor gave us a list of very scary outcomes. His arms and legs were also very far behind. The first doctor told us that he could have Down's Syndrome, dwarfism and many other scenerios. She told us there was very little chance he would be normal. We got 2 other opinions. One of which gave us the option to terminate the pregnancy to help his twin stay with the pregnancy longer. It was the darkest, most scary time in our lives. Should we save one of our sons and sacrifice the other? Should we take a risk and end up with two boys who could be disabled? We went with the doctor who gave us a third opinion. Thank god we did because we ended up with two totally healthy twin boys. They are now about to turn 7 and they are doing beautifully.
Tyler was born with his arms and legs smaller, but it wasn't noticable and he quickly grew to have normal length legs and arms. The doctor told us that his arms and legs didn't grow as fast during the pregnancy to save his brain. We think for some reason he wasn't getting enough nutrients and it's the brain's way of saving itself. He did take growth hormones because he wasn't growing properly, but he is now a normal height and he stopped taking the hormones when he was 4.
Please tell your friend to keep hope. We had very little hope that our son would be normal and we feel so blessed that he turned out the way he has. But, remember that all children, disabled or not, bring many blessings.

S.,
I am a private duty nurse for a little girl with Downs. I can tell you that her mother would tell you she wouldn't have it any other way. Please let me know if her son is diagnosed with Downs as there is a wonderful support group that I could put her in contact with in the DFW area. Down Syndrome is the #1 birth defect in the WORLD. So there is lots of research available out there.

Here is a very heart warming poem to share with Lisa. I will definately be praying for Lisa and Drake.
Welcome To Holland
by
Emily Perl Kingsley

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 ... about Holland.

* * *

©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.

Did they do a nuchal sonogram when she was about 12 weeks pregnant? Have they seen fluid on the back of the baby's neck? What about her blood work? These are all methods of screening but you haven't said if the doctor has done them and what the results were.

I wish her the best.

I was told all of the same things. My child may have downs, he may be a dwarf. I laid awake many nights crying and upset. It is hard when you are going through it to accept it. I went for multiple sonograms for the last 2 months of pregnancy, all concerned with dwarfism (downs was ruled out by a test). My son turned out perfectly normal, though a little short. Not dwarfism short by any means, just on the smaller side of normal.
What bothered me for a long time, is that the doctors who put all these fears in my head saw me on my delivery day, and never once came by to say anything to me. No, "congrats", or even "glad it all turned out fine".
I know its impossible for your friend, but try and convince her not to stress over it too much. Whatever is meant to be will be. I'm not religious, but I do know that He will not give us anything that we can't handle.

My cousin was told the same thing. They did extensive testing and it turns out that short limbs just run in the family. Both her huband and father have long bodies and short arms & legs. I hope all is ok and this gives you and your friend some peace of mind.

First off, I will definitely be sending up prayers. Did she have an AFP done? An abnormal AFP may indicate down syndrome. Since she's so close to delivery, Down Syndrome confirmation can wait until the baby is born. At the same time they can run other genetic tests to rule out dwarfism and other abnormalities.

All 4 of my children were born without any of these conditions, and I don't have any advice on what the outcome may be. All I can say is keep praying and when the baby comes, be there for your friend. If the baby does have some problems, remind her that God never puts more on us than we can bare. I'm sure she will fall in love with her baby either way, and that special child will brighten their world.

Praying and wishing your friend a beautiful, healthy baby

First of all, tell your friend that we are all sending up prayers for their entire family.
My second son was born with a type of dwarfism, but it was lethal and he did not live. It was 7.5 years ago. My suggestion to your friend is that she should definitely ask her OB to send her to a perinatologist who can confirm if the baby has dwarfism or not. Also, there are so many different kinds of dwarfism, but mine just happened to have a lethal kind. Are they in this area? If so, I can definitely recommend a great perinatologist. Let me know if you need any further info, I'm happy to help. Also, if it turns out that he does have a form of dwarfism, she might want to talk to someone and I'm happy to do that, too. You can see some pics and read the story of my son, Logan, on my website: www.thefishbowl.name
I will keep them in my prayers!!!
~B.