Down Syndrome

Linny40 · February 2016

I got my test results back from my informed pregnancy screen (NIPT) and the genetic counselor told me I have an 80% chance of having a baby born with Trisomy21. I am still in shock. I am going in for a CVS to confirm on Monday but the odds that it is a false positive are heavily stacked against me. I am so emotionally overwhelmed right now. I have two beautiful children, 3 1/2 and 1 1/2 and I am just feeling sad and and afraid right now. Anyone else in a similar situation or know others that have been through this?

BostonBaby1 · February 2016

*lurking*

Sending you tons of (((hugs)))

crob5685 · February 2016

Sorry you didn't get the results you hoped for. So hard! I'm sure there are a ton of resources and support groups you can get plugged into now as you adjust to the news and begin to think about what this will mean for you. HUGS!

jamiesc58 · February 2016

Sending lots of thoughts and prayers out to you! Good luck and fingers crossed for positive news.

Hummingbird125 · February 2016

Sending you lots of virtual hugs. Take the time you need to digest this news, and then arm yourself with good information when you're ready to. Lots of positive vibes coming your way

tmk0325 · February 2016

Thoughts and prayers to you!

ReadyForaB · February 2016

Sending hugs. My DH grew up with a Down syndrome sister. I brought up the genetic testing to him and his response was "why? A was Down syndrome and she was just like me and B. My parents didn't treat her differently and it won't change anything." I'm not saying I have an opinion about you getting the test, we're honestly still a little up in the air about it (although leaning more towards not getting it) but I'm saying that coming from someone who grew up with a Down syndrome sibling, all will be okay. Now, I hope you don't have to go through that but, if you do, it's not the end of the world. At least you have time to prepare for the possibility.

MSUgrad12 · February 2016

This would definitely be overwhelming news and be hard to process. I don't have a child with down syndrome, but I promise if that child has down syndrome, you will still love them as much as you would another child. I am taking a class right now and we just read an article that you may help you during this time. I have included the link for you. Don't be dissuaded by the title.

https://abcnews.go.com/Health/w_ParentingResource/down-syndrome-births-drop-us-women-abort/Story?id=8960803

darlingc · February 2016

It is 100% ok to feel however you feel. Sending good thoughts your way. I love the website "The Mighty." Here are 2 great articles:
Http://themighty.com/2015/12/what-no-one-told-me-when-my-child-with-down-syndrome-was-born/

https://themighty.com/2015/11/families-make-emotional-video-for-new-parents-of-kids-with-down-syndrome/

Ceventa · February 2016

Lots of thoughts and prayers to you and your family

Kristin712 · February 2016

Lots of hugs to you. I hope you get some happier news from your CVS. Know that your feelings are valid and okay to feel.

Whatever choices you make moving forward, know that you made the right choice for your family and that is all that matters.

smilormarie · February 2016

Best wishes either way. Unlike the majority of moms, I'm not afraid of a Down's syndrome Dx. That doesn't mean I wish for a Down's baby but I'm fearful of the other trisonies that are incapitable with life like trisomy 18, 19, 13. And others. This way you get a baby who will be adorable and I've never known any downs people who aren't the happiest, sweetest people ever. Read up on the condition because there can be physical health problems associated with Down's. And I hope the CVS gives you an all-clear and baby is perfectly healthy.

TX126 · February 2016

Sending you hugs and good vibes!

MamaKSquared · February 2016

Sending positive thoughts, prayers and vibes your way!!!

Linny40 · February 2016

Thanks everyone for your supportive posts. I feel lucky to be part of this community. I will keep you posted.

DDRRT1982 · February 2016

I am sorry you are stressed and worried. There are lots of resources out there to help you prepare for a child with special needs. Children with Downs Syndrome are innocent and wonderful people. This might not be the journey you were expecting, but I bet this child will teach you so much and show you just how much your love as a mother exceeds your expectations. Thinking and praying for you and your family.

kwilliams3402 · February 2016

Sending prayers for you and your family!

searchingforameaning · February 2016

Im so sorry that you are in such a hard place right now. I get my results by the end of the week and I am not sure how I would feel if mine came back positive. I do know that I have a friend who was told their baby would have Downs, and when he was born, it was very apparent that he did not have downs. Praying you will have peace during these hard moments ahead.

bananers · February 2016

I'm so sorry and I can't imagine how overwhelmed you must be right now. Sending big hugs.

sunshinern96 · February 2016

*Lurking from Sept 16*

I am sorry you are going through this. I just wanted to let you know that your post made me think of my friend who is about to have her baby any day now. She was told in the first tri that the baby had a 95 percent chance of having Down's Syndrome. They did the CVS and the results came back that the baby did not have Down's Syndrome and is perfectly healthy!! She and her husband were convinced the baby would have Down's and they were shocked that everything came back normal. So, there is still a chance that everything will be ok.

Secondly, I would highly recommend the blog Enjoying the Small Things by Kelle Hampton. Just search it up on google! I am a mother/baby nurse and one of my patients whose baby had Down's Syndrome told me about the blog years ago. It is written by a mom who has 3 kids and her middle daughter has Down's Syndrome. It was not diagnosed during the pregnancy so she was shocked when the diagnosis was made after birth. Her daughter is 7 now I believe and is doing very well!! The author of the blog also wrote a book called Bloom about her complicated feelings surrounding her daughter's diagnosis. I ended up reading the book because her blog is so wonderful to read. Just a couple of suggestions to help you feel better during this difficult time!

kcolly32 · February 2016

So sorry to hear about your results, I know it's not what anyone wants to hear. I'm getting the test done next week and I can't imagine what hearing that news is like. Thoughts and prayers for you! Hope your CVS shows better results.

kriley602774 · February 2016

Sending positive vibes your way! It's perfectly normal to have the feelings you're having. And like some of the above posters mentioned, when you're ready to can arm yourself with resources to get you through this. You can do it momma!

pelorunningmama · February 2016

Sending positive thoughts and prayers your way as well as support. It looks like you got a ton of great advice here.

HeyStVincent · February 2016

I'm sorry you are going through this stress. Remember that this is just a screening. Screenings ARE NOT diagnostic. Amnio or CVS is a good idea to be more certain with your results. Also, T21 can have different variants known as "mosaicism" and the person born with mosaic-type can sometimes look chromosomally normal and have normal function. CVS or amnio should be able to tell you more about the type of T21 your baby has *if* it even has it.

If the results come pack positive for T21, I would encourage you and your husband to think a lot about the dynamics of your relationship, the needs of your family, and what your faith/belief system tells you when considering how to proceed. No one way of handling it is the correct way. It's completely dependent on the person, their situation, and their own deeply held personal beliefs. What one person or one family did may not be the best option for you and your family because you come from different backgrounds with different life experiences. Do what is right for you.

I hope, however, the CVS gives you the news you are hoping for and you don't have to make any hard decisions. Much love to you guys right now.

Abcd7890 · February 2016

Thoughts and prayers for you and your family.

jolydan · February 2016

Sending thoughts and prayers your way and hoping you can find peace in this situation

@sunshinern96 I would definitely not recommend reading Kelle Hampton as its really known in the blogosphere that she exploits her kids, Nella the DS kid especially for her own profit. Also, she doesn't help her kid with therapies but use her as a prop for her photo shoot... There's ton of more meaningful resources out there.

Duffgurl · February 2016

Sending my T&Ps to you. ::Hugs::

sunshinern96 · February 2016

@jolydan wow I'm so sorry, I did not realize she exploited her children. Will have to look more into that. Thank you for the head's up. I'm so sorry if that is true, I didn't mean to recommend a bad resource!

1faceinacrowd · February 2016

Don't give up hope just yet. My DH and his ex-girlfriend were told, when she was pregnant, that there was a nearly 100% chance that their son had Down Syndrome. They did some additional testing and learned that he was perfectly healthy. He's 5 now, and he's healthy as a small horse!

No matter what the results, PPs said it best - you'll do what's best for your family, no matter how you proceed, and you'll learn and grow from this experience no matter what.

Best of luck to you, mama. Keep us posted.

cbpalagi · February 2016

I'm sorry you're going through this. I just wanted to say that my aunt has Down Syndrom, and she's awesome...love her to death!

echurley · February 2016

I had bad initial results with my 4 year old. High risk of trisomy18. Got a level 2 ultrasound then amniocentesis. Wound up being 100% healthy. Up until genetic testing they are essentially making educated guesses about your child's risk based on factors that have been shown to be strongly correlated (but aren't always a sign) of genetic diseases. I didn't really understand this until well after the fact. Remember, right now it's just a guess. I wanted a definative answer (hence the testing). I know you are scared, but hang in there.

Squali316 · February 2016

No matter what the outcome, your baby is perfect.

The Congratulations Project

https://youtu.be/yEJV4fMtqpc

bananers · February 2016

@Squali316 that was beautiful. I'm ugly crying now.

pourmeanothermocktail · February 2016

Lurker from July 2016: What the PPs say, a screening test doesn't necessarily mean anything. However, one of my good friends now has a 13 daughter that has Down Syndrome and while there have been a few health concerns, she's a wonderful happy healthy teenager! Here's some interesting and helpful resources, if you like to read up ahead of time. If not, then ignore.

https://gigisplayhouse.org/ - group that connects people & children with Down Syndrome and is a community resource.

https://www.gillianmarchenko.com/ - blog written by a mother of 4, two of her daughters have Down Syndrome

https://www.ndss.org/Resources/New-Expectant-Parents/ - official Down Syndrome Society page, with info for pregnant parents

NICU RN · February 2016

No real advice, but I'm thinking of you.

Linny40 · February 2016

Thank you all so much. I had my CVS test yesterday and am awaiting the results. In the ultrasound he also had other markers- thickened fluid behind the neck, etc. I am certain that the diagnosis is that he is a Down syndrome baby and I am not holding on to any hope that it is a false positive. I have been battling with such deep emotions and thoughts since I first found out last week. I have come to terms with it and accept the diagnosis and would like to continue the pregnancy and raise this little guy to the best of my ability. I have no doubt that I will love him unconditionally and he will bring me more joy than I can imagine. And when I saw him on the ultrasound I don't see any imperfections, he looks perfect to me and he is who he is meant to be. The enormous challenge that I face is that my husband is pretty clear that he doesn't feel capable of raising a child with special needs. I am exposing him to all sorts of information and we are going to crisis therapy and planning to meet some families as soon as possible but I don't know how to make him want to do this with me and I feel like the child needs both parents to go into this fully wanting to accept and love the child and take on all responsibility of whatever needs they may have, like any child we are so blessed to raise. But it feels very wrong to push him into it and have him resent me and I am afraid of the strain it will put on our marriage and our other two children need a family unit that involves 2 parents. If any one has advice as to how I can get him to come around I would love to hear it. I am just so deeply torn up inside and I can barely function right now. The incredible love and support of family and close friends is what is getting me through right now. And my faith in God to help get through this difficult time.

Katienu · February 2016

I don't have any real advice only that I have a close family member that went through this not too long ago. I will share that with you.

She chose to have the baby but was scared about her husband and children would handle their child. Bode was born with Down Syndrome and he has been the biggest blessing to our entire family. It has expanded our view of what a 'healthy' child is and we are all lucky to have him in our lives. My cousin tapped into every state resource available to help with childcare. It is amazing what is offered - physical therapy, cognitive learning classes, even baby massages! It is hard to put into words how much he has changed the world but the love we all share is so big and powerful. I wish you only the best. You are in my thoughts and prayers.

bananers · February 2016

No real advice, just hugs. I hope the therapy helps you and DH feel good about whatever you decide to do.

Kristin712 · February 2016

@linny40 I think you are taking the right steps by attending therapy and meeting some families to talk about your concerns. I am so sorry you are going through this. I hope therapy can help you and your DH reach a decision you are both ultimately okay with. As you mentioned, a family needs two parents on the same page. Parents who have a child with special needs are dealt all sorts of stress that can really strain a marriage. I think continued therapy will be beneficial. I work with children with special needs and love every last one, but honestly don't know if I would be strong enough to do it myself. Sending you big hugs and positive thoughts!

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