Down Syndrome

iVillage Member
Registered: 07-08-2004
Down Syndrome
5
Wed, 03-02-2005 - 5:10pm

Hi! I'm new to this board and I know I'm getting ahead of myself, but I can't help it. I go in for an amniocentesis Friday because my quad panel came back with a seriously increased risk of my baby having Downs. I am 17 weeks pregnant. This is my second child. My first is happy, healthy, no problems and there isn't Downs in either mine or my husband's families, but here's my question and I'm hoping maybe some of you can help. If the test comes back positive for Downs what are the first things I need to do? I know I'm getting ahead of myself and I have an appointment for genetic counseling on the 22nd of March (just in case we need it) but my biggest thing is I need some advice from parents who have been through this not from medical professionals but from real life parents. If my baby has Downs, what are the first things my husband and I need to do to be prepared and to give our baby everything he/she needs. I just want a happy child and I have so many questions and fears swirling around in my head.

Can anyone help?

iVillage Member
Registered: 06-15-2004
In reply to: sarahfix
Wed, 03-02-2005 - 5:43pm
Hello! I'm new to this board as well, so greetings to you. I have a 3 year old son with Down syndrome and I thought I would try to help you with my story and suggestions. I had the triple screen done and mine came back negative. I was not at-risk or considered having a child with Down's, I was told after he was born. There is a test out that can be done between 8-11 weeks called a CVS. I don't know if it can be done at 17 weeks, but it's worth a try to ask. With this test they will be able to tell you almost 90% if the baby has Down's. The dr will take a sample of the placenta and check the chromosomes. I will have to have this done for any future pregnancies. Genetic counseling can be done, just check with your local children's hospital, if you have one, and find one that specializes in pediatrics. If your baby is diagnosed with having Down's, the best thing to do to get your baby services quickly is to see if you have a local Down syndrome support group, clinic, or association. I live in Cincinnati, Ohio and we have a Down syndrome clinic and a website (www.dsagc). Also, check in with your local MR/DD. They have programs that are for children with developmental delays. We have an Early Intervention Program and Help Me Grow. They come to your house and work with your child on developmental milestones. They are also many financial services that you can look into. I hate to say this, but there will be LOTS of doctor visits and therapy. Any financial assistance you can find will help you. In Cincinnati we have Family Resource and BCMH. You can check to see what you have that is similar. I hope the information I gave you will be beneficial if you need it. It is a hard thing to grasp at first if you find out your baby has Down syndrome, but just remember, if your baby has Down's it is only a part of who they are. They are a wonderful person first, don't let the Down's consume them or yourself. My son is the light of my life. I couldn't imagine him any way else. Down syndrome is not who he is, it just happens to be a diagnosis. Let me know if I can help you in anyway!
Amber
iVillage Member
Registered: 03-19-2003
In reply to: sarahfix
Wed, 03-02-2005 - 7:45pm

Hi and welcome to the board.

 


 



iVillage Member
Registered: 07-08-2004
In reply to: sarahfix
Thu, 03-03-2005 - 10:31am

Thank you so much! Your post brought tears to my eyes. I love this baby more than my own life and it hasn't even been born yet! Thank you for sharing your story and the resources you use. My husband and I know that if the baby has Downs there will need to be some major changes in our lives and lifestyle, but I'm okay with that. My biggest concern is to be sure the baby has everything he/she needs and is happy and loved. You said there are a lot of doctor's appointments and therapy, is your son sick a lot? Is it little stuff or more serious. What are the medical concerns vs. developmental?

Thank you so much for your help and support. I'm so glad I found this board. I have an amniocentesis tomorrow and that will tell us with a higher than 95% certainty whether or not the baby has Downs. At least I know if it turns out yes, I'm so glad to know there are people like you out there willing to help.

I can't tell you how much it means to me.
Thank you!
Sarah

iVillage Member
Registered: 07-08-2004
In reply to: sarahfix
Thu, 03-03-2005 - 10:33am
Thank you so much. I'm so glad to have found this board. I have my amnio tomorrow and a few weeks later I should know for sure, but I'm so glad to know you're all here. Thanks so much for the support.
iVillage Member
Registered: 03-19-2003
In reply to: sarahfix
Thu, 03-03-2005 - 10:54am
Please come and share as often as you need.