- Pregnancy
- Baby & Toddler
- Parents
- Getting Pregnant
- Baby Names
- Product Reviews
-
Registry
- Community
-
More
Want a personalized experience?
Download the free app
Success after IF
Petrified. DD might have Downs Syndrome (long)
I am so scared. I don't know what to do or say or think or anything...
I have always worried about DD... When she was born I noticed her head was different shaped and her nose was a little different. I was a little worried, but no one else was so I let it go. Now it seems more and more things are stacking up to point towards Downs Syndrome, her eye shape, her nose, her tongue, her fingers, her toes, etc. I can't believe that no one has brought this up before now. I can't believe that I had to call the pedi to discuss this.
Yesterday I was looking at a blog and there was a photograph of a little baby girl with Downs Syndrome and DD looks just like her. My heart sunk, I almost threw up. So, I looked up more information on Downs Syndrome and she has some many of the chacteristics... I called the pedi. Apparently he has the same worries about DD and was going to bring them up at the next visit. What?!!? Why so long?
We are taking her tomorrow for a blood test and then will wait for 2-3 weeks to get results. I am scared. I know that we don't have the results yet, but deep down I know that she has it. I pray that I am wrong, I pray that I am seeing things, I pray that the test will be negative.
I don't know where to go from here. What do I do? Where do I look? What does DD need? I feel like we are 4 months behind in getting her help and I am so sad about that and so mad that my pre-natal screenings were fine. How does that happen? How can she be the 1 in 1800 (or whatever the exact number was)?
I appreciate any thoughts, prayers, advice, anything. I am having a really hard time right now and am so worried.
Nothing to see here....
This discussion has been closed.
Re: Petrified. DD might have Downs Syndrome (long)
I don't know if you have ever read the "enjoying the small things" blog but her second daughter was born with Downs and they weren't expecting it either. The story of her birth is VERY emotional to read...maybe she has some links to some helpful information?
I am so sorry you are just figuring all of this out now...you whole world must be rocked. I hope you get some answers soon. MrsY (I don't know if you remember her) might be able to help too.
Hugs! I can't find the right words to say...but I hope you are okay.
(((hugs)))
I hope these two week fly by and you get good news!!
Because we're fancy like that.
Oh abc... I'm sorry you have these worries!!!! I hope the testing come back as nothing. If you are looking for someone to talk to my gf gave birth to a healthy baby and then the doctor came in later and told her his concerns. She also was IF and suffered many many m/c. She is always willing to talk to people and really knows the right thing to say. Please let me know if you need to talk someone like that.
I will be praying for you and Lily.
Married 8.13.2005, M/C 12/8/06- 5 weeks, M/C 2/27/07- 7 weeks, M/C w/ D&C 8/10/09-6.5 weeks *Charles Lawrence born 5/2/08 @ 3:14am, 7lb 8oz, 20.5 inches. Clomid, Crinone and baby aspirin. *Alexandra Claire born 9/14/10 @ 9:52am 6lb 14oz, 20.5 inches. Femara, Crinone and baby aspirin.
TTC #1- unexplained...lost left ovary 4/07 IUI #1 2/10/09-BFN IUI #2 3/5/09-BFN IVF # 1-BFP
TTC#2- FET 4/7/11 BFP, Natural mc 5/5/11 IVF#2 ER 9/13/11, ET 9/16/11, Beta #1 9/27/11 BFP 254 Beta #2 9/30/11 793 -Twins!
I am so sorry to hear that. Thank goodness you called the pedi! You are absolutely right in pursuing this to make sure she is getting any help she may need. I pray that you get good news in 2 weeks and that this is just a scare...
I am blanking on her name, but there is another SAIF'r who doesn't post as often whose son has DS and she might be able to offer you some other resources if things head in that direction. I hope that these test results come back quickly and that you get good news.
Huge hugs to you - hope you are still able to come tonight...
I can only imagine how upsetting this is...such an unusual situation to have DS suspected so long after birth. My goodness. Perhaps this is naive of me, but I wonder if the fact that her physical characteristics are mild means she may have a mild form of DS? Still a scary scenario, I know...but I'm trying to see the bright side, if there is one. I emailed MrsY and told her about you - she a nearly 3-year-old son with DS and used to be a regular on SAIF. Hopefully she'll pop in and share some of her wisdom/support.
Big hugs to you!
LO #1 - 1 unmedicated/self-monitored IUI w/ donor sperm.
LO #2 - 1 m/c, 2 BFNs, 4th IUI worked (unmedicated/self-monitored with new donor sperm).
Life is beautiful!
I'm sorry you are going through this. Your dd is lucky that you are so proactive and making sure she is getting all that she needs no matter what the end test results. ((HUGS))
Clomid M/C 8 weeks 2/08 *IVF #1-DD born 3/09
*Surprise BFP-T18 baby lost at 13w 1/10 *FET #1-DS born 2/11
This. I am so sorry. I hope that everything is fine. ((HUGS))
Diagnosed PCOS & MFI-Success with IUI
I can't belive your pedi did not say something right away - whenever he first suspected something. I have a girlfriend with a son who has DS. He is 3 right now and doing so well. He is in school, he has no language yet but he signs so the communication is there. He is doing so well.
Everything will be fine - I'm praying on it.
Thanks guys. I am really struggling right now and at the same time I am trying to have everything be as normal as possible for our 3-year old. I am just so scared.
Anyways, I am FB friends with Mrs.Y, so I did send her a message, but thank you for pointing me that direction.
Skimmy, I would love ot talk/email with your friend if she doesn't mind.
I am taking DS2 to the pedi today to check for an ear infection so hopefully I will get a chance to talk with my pedi more about what we need to do and also why it has taken 4-months to get to the point of testing. The one thing he did say was that sometimes the features can be hidden by baby fat and as the baby sheds some of the puffiness and grows a bit the features can become more pronounced. Now, some of the issues have been there since birth (fingers/toes) so I dont know why it wasn't questioned then...
Thanks again.
(((hugs))) I can't believe your pedi waited to bring up his concerns. I think that's totally unacceptable and that he should have brought them up the moment he had them.
If your DD does have Down's, there are going to be thousands of resources to help you decide the best course of action. And she is still going to live a wonderful, happy life. In no way do I mean to minimize the seriousness of the diagnosis, but Down's always scared me less than other conditions, because everyone I've ever met with Down's has been a friendly, loving, cheerful person.
I hope you get some answers very soon. I know how devastating this must be and we are here for you whenever you need us. (((Hugs)))
"When it comes to sleeping, whatever your baby does is normal. If one thing has damaged parents enjoyment of their babies, it's rigid expectations about how and when the baby should sleep." ~ James McKenna, Ph.D., Mother Baby Behavioral Sleep Center, University of Notre Dame
I'm sorry you're faced with all these questions and hope you get answers quickly. I'll be thinking about you and your family!
I am so sorry you are getting this news now. I hope and pray you get good news. No matter what, you are an awesome mom and DD will be fine! She will be loved! We are here for you always!
"I have four children. Two are adopted. I forget which two. -Bob Constantine
"All for Love,' a Saviour prayed 'Abba Father have Your way. Though they know not what they do...Let the Cross draw men to You...."
Oh my goodness - what a tremendous shock. I too would be dismayed by such a late diagnosis. My (totally amateur) assumption would be that if indeed she has T21 that she may be mosaic, accounting for what sounds like a very subtle presentation. My understanding is that people with mosaic T21 tend to be the highest functioning, can be mainstreamed and live independently. I know it's easy for us to throw out platitudes (and I just did!), but I don't think we can really understand how scary this is for your family. Thinking of you.
I am a runner, knitter, scientist, DE-IVF veteran, and stage III colon cancer survivor.
Thanks... I briefly saw something on mosaic T21 but will look up more about it. Thank you.
My DH just took the twins to see the pedi b/c both are sick and now we are worried that DS2 has an ear infection and that has been keeping him up all night... Anyways, he is going to ask more questions and mostly ask WHY DID IT TAKE SO LONG?!?!?! I just want to scream WHYYYY!!!???
Epphd - I think about you and your family often, too.
I am so, so sorry. I hope you get some answers soon and can get the help she may need.
A very similar situation happened with a friend of mine. Her DS was not diagnosed until he was 8 weeks old, although many of us noticed characteristics of Down's from day one when she started sending around pics.
(((HUGS))))
(((BIG HUGS)))
I know waiting on tests to see if something not typical is going on with your child is so hard and so scary.
You are an amazing mom. You have not wasted time, you have researched this and made phone calls that is doing something. I know what you were trying to say but, you are being proactive.
If it comes back that your DD does have ds she will still be the same beautiful, perfect daughter you to. You will likely have new kind of love join the love you already have for her and her brothers, it is a very protective kind of love. At least that was the case for us when Isabel was dx with Autism. A whole new mama bear I did not even know was inside me came out.
I'm sorry you are going though such a scary time. I will keep you, your sweet DD and the rest of your family in my thoughts and prayers.
Also, ditto pp, if you don't you may really enjoy reading the blog, Enjoying the Small Things. It is a beautiful blog, she is a mom, who rights well and is a great photographer and like pp said gave birth to a little girl with ds. She was the first one to notice it. Here is the link, it goes straight to the birth story. I would start there and take your time reading all the way through. I don't even really follow blogs but, I love hers. **Warning**Warning**Have plenty of tissue on standby**
https://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html
Married 8.13.2005, M/C 12/8/06- 5 weeks, M/C 2/27/07- 7 weeks, M/C w/ D&C 8/10/09-6.5 weeks *Charles Lawrence born 5/2/08 @ 3:14am, 7lb 8oz, 20.5 inches. Clomid, Crinone and baby aspirin. *Alexandra Claire born 9/14/10 @ 9:52am 6lb 14oz, 20.5 inches. Femara, Crinone and baby aspirin.