Seeking Others Who Have Been Told Their Child Could Be Born with Downs Syndrome

I was in the same situation as you about 2 1/2 years ago. My bloodwork came back with elevated risk for down syndrome and when we spoke with the genetisist they said that our chances based on the bloodwork were about 1 in 60. We were very nervous and had the level 2 sonogram that they recomended. They didn't see anything that made our chances increase but couldn't tell us that everything would be okay either. We, like you, did not want to take the risk of the amnio because the results would not change our decision. The last few months of my pregnancy were very anxious and nervous wondering what would happen. Sept 14, 2006 I gave birth to a wonderful baby girl and my first question to the doctor was "is she okay?". She was perfectly healthy and will turn 2 on Sunday. If we have another child I will refuse to have that particular bloodwork because it caused needless worry and stress. I wish you the best and the strength to get through the rest of your pregnancy. Even if your baby does have downs he will be a special child and a gift.

You sound like a very strong woman, and you've already done a lot of research.

I just wanted to say, I've had friends who had their blood come back positive for an increased chance of Downs, and their babies were perfectly healthy. I'm not sure what blood test you had done, but sometimes they have been known to give false positives.

Here's a link for you for the Down Syndrome Guild of Kansas City: http://www.kcdsg.org/community_groups.php?show_child=77

Hi A.,

I first want to commend you for learning to accept and be open to God's plan. I also believe that very special people are given gifts like this... we can learn so much from the special needs community.

I do want to recommend a site. It is a place located at Shawnee Mission Hospital in the Life Dynamics building. It is called Lee Ann Britian Center. I volunteered there in the past. It is an INCREDIBLE facility. It is basically a school for special needs children and their parents. They interact through music and physical therapy... it is incredible.

https://www.shawneemission.org/content/view/337/648/

Good Luck with everything on your plate. I just know that no matter what, you are going to have a child surrounded by love.

I think it sounds like you are your husband are doing incredibly well, given the news you have been given.

My son had a few Down's indicators while I was pregnant. My husband and I also decided to forgo the amnio for what seems like the same reasons you did. I already had an increased chance of a miscarriage due to some fibroid problems and didn't want to increase it further. But most of all, this was our baby and we were going to love and take care of him no matter what - so having the test done really would have made no difference in the long run. And, as your research has probably shown, and the responses you have received on here demonstrate, sometimes these tests are inaccurate. The doctors can only do their best to prepare you, they can't tell you how your little Victor will come out, or what he'll be like a year after he comes out.

If your heart tells you amnio wasn't the way to go, and your husband was supportive of that, there is no question you did the right thing.

You are strong woman and no matter the health circumstances surrounding Victor's pregnancy and birth, he is lucky to have you as a mommy. Already, you are trying to educate yourself and make the right decisions for him.

When I was pregnant with my third child who was born in Feb of 06 I had a level 2 sonogram due to my age(39). At this sonogram they announced that our baby would be a boy! (We had two girls already) What a joy! Then they proceeded to tell us that due to a few things the sonogram was showing there was a good chance our baby would have Downs syndrome. We opted to have the amnio doone right then and there so that we would know and prepare ourselves and our daughters. A few days later the results came back negative. I really believe all of these advanced tests and screenings frequently cause alot of needless worry. Our son was born by c-section (because my other 2 had been) and was -and is a perfect joy! Good luck to you and your family- We'll be praying for you.

Here is a wonderful place in Kansas City that I know can provide ample resources. www.childrenstlc.org I also strongly recommend Parents as Teachers (found on the internet) for anyone with kids - If you are from Lee's Summit there is a place called "Great Beginnings" located at Legacy Park. You'd be surprised what your tax dollars pay for.

The same was said of my brother. They tried to talk my parents into an abortion, which they would hear none of it. He is turning 16 next week and is just fine! If Victor has down syndrome, he will still be your little joy! I'm sure you and your husband will be wonderful parents for him! God will help you through it! I used to babysit a few children with down syndrome, they were so happy and a joy to care for, I know it is not always easy but that is how all children are...and we can't live with out them!! :o) I really appreciate you and Jesse's attitude about all of this! I am sorry for the complications with the pregnancy! I will pray for your entire situation!

We will be praying for your family. What a wonderful blessing this little boy will be to everyone in his family and community. An excellent resource for you is the Downs Syndrome Guild of KC at http://kcdsg.org/ Please also consider attending the Buddy Walk on October 18, 2008, at Arrowhead Stadium. You can access the Buddy Walk via teh DSG web site. The Buddy Walk, is a wonderful family festival. It would be great way for you and your sons, soon to be big brothers, to meet other families with children of all ages, ability and differences.

A....I was in your EXACT same predicament 17.5 years ago!! I, too, opted not to do the amnio. Turned out, my son was perfectly normal. And to think I could have terminated that pregnancy.

Best of luck to you!

A.,
I had children at 39 and 41. I learned a few things along the way about being an older mother. The older you are, the more likely the blood work will come back with a false positive. I didn't have aminos on either baby due to the risk of miscarriage. Have you had a level II ultrasound? This is with a neonatalogist where they do very detail measurements of the baby. They can help determine if there is a risk of down's syndrome by the measurements. I had them done on both of my pregnancies. I hope everything turns out well.

We did level 2 sonograms with both of my kids (heart issues in the family). They said the skin on the back of his neck was measuring thick, so that could be an indication of down's syndrome. We also were a week or two late in getting the sonogram (I think about 26 weeks is when they like to do it), so it could have meant nothing. We opted not to do any further testing, since there were no other indications that he had downs. He did not have downs when he was born. Anyway, I guess I am saying that you may want to ask for a level 2 sonogram and that may answer your questions without doing the invasive amnio.

You are in my prayers. God bless you. I applaud you for making the decision you have, and I know Victor will be a blessing to your family.

S.

I just want to second what several others have said. I refused to even have the test done because I knew three seperate people that had false positives. When I told this to my OB as the reason for my refusal he agreed with me that there is a high percentage of false positives. My other reason for refusing the test was that no matter the results it would not have changed the outcome..I was having the baby and would love him/her regardless of what might be wrong with him/her. I was 33 and almost 35 when my children were born. My son was born with a eye disorder that was not genetic but a "fluke" in the develpment process and we went through a lot of surgeries and Dr's visits in his first few months of life. We got through it and he is the most wonderful perfect little boy (to my husband and me at least.) Others might not agree because he is blind in one eye and it does look a little messed up but once you get past that you learn that he is so loving and funny and has the best giggle of any little boy alive. No matter the outcome of this birth you will love your child and he will bring you so much joy.

On another subject you should talk to my husband about fish tanks. He has a 210 gallon, 3 smaller tanks (10, 20, & 29) and is working on a new stand for his most recent purchase of a 450 gallon tank. I told him he had to make a pretty stand for it before he could bring it in the house!! His oldest son (my stepson) is also in Scouts and he stays home with our two little ones, ages 3 and 16 months. He is also on the computer on fish web-sites all day...the forum at www.kcfishclub.org. It sounds like you two have a lot in common.