Trying not to cry

chance_encounters · December 2013

My Dr. Just called and my prenatal screening came back 1:6 that the baby will have Down syndrome. She had me go straight in for the Martni21 test. Has anyone else had this happen? What were your end results? If it turned out positive, how are you preparing for a special needs baby? Thank you ladies.

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This is also on the pg after 35 board.

erind228 · December 2013

I haven't experienced a similar situation, but wanted to send my thoughts and prayers. ((Hugs)) to you!

babygabe614 · December 2013

FTM here so I can't speak from experience but I'm sending t&p's your way. ((Hugs))

JulieSmiles · December 2013

No experience, but T & Ps for you. To prepare for a child with special needs, I would research local support groups plus look into what services through local agencies and schools you can get for early intervention. For example, my niece was able to get into a school for children with special needs at 13 months and they got her physical therapy, occupational therapy, and speech/ language services immediately.

SecondTimeinMSU · December 2013

I am really sorry you are going through this stress. 1 in 6 sounds scary but that really is only 16.6% so try to focus on the fact that the odds are still your favor at this point until your know more. But if the diagnosis is down syndrome it is amazing how far therapies and support have come.I just read the other day about this awesome kid Rion Holcombe who is going to Clemson University as part of their program aimed at people with intellectual disabilities. Also I love following the blog https://www.themaidenmetallurgist.com/ for her great outlook on her son's diagnosis.

kd&cd · December 2013

No experience here...just wanted to say I'm thinking about you. Remember, we are only given as much as we can handle, no matter what the end result, you can do it!! Hugs to you!!!

chance_encounters · December 2013

SecondTimeinMSU said:

I am really sorry you are going through this stress. 1 in 6 sounds scary but that really is only 16.6% so try to focus on the fact that the odds are still your favor at this point until your know more. But if the diagnosis is down syndrome it is amazing how far therapies and support have come.I just read the other day about this awesome kid Rion Holcombe who is going to Clemson University as part of their program aimed at people with intellectual disabilities. Also I love following the blog https://www.themaidenmetallurgist.com/ for her great outlook on her son's diagnosis.

Thank you

MissBHaven1024 · December 2013

We had a slight increase of risk of Down's after our NT scan. We had the free cell dna testing done, and baby came back completely healthy. I am so sorry that you are going through this; it is definitely scary and nerve-wracking. I am praying that all tests come back that baby is healthy, however I also want to say that if baby does come back positive for Down's, there are great support groups on TB, and we will definitely be here for you as well!

Sending you big hugs and lots of prayers!

Mztwilson · December 2013

No experience but I'm so sorry. Thoughts and prayers to you!

mommyof2boys922 · December 2013

Thoughts and prayers!!!! And a huge hug!!! Please keep us updated!

nunzchucks · December 2013

T&Ps and big hugs!!

wtfisup · December 2013

Keep in mind, it's still a 5 out of 6 chance that it doesn't have DS. Imagine if you were told that you had a 5 out of 6 chance of:

Winning the lottery
Never getting seriously ill
Making out with Benedict Cumberbatch (substitute as needed)

You'd be like HELL YEAH. Your baby has those odds.

hjl050308 · December 2013

No experience with this but sending you good thoughts and prayers.

lucreciac · December 2013

My first tri screening came back with an elevated risk. It was so scary and heart wrenching, I didn't relax until we got our harmony results back. They came back fine so I know it's scary but wait and see what the other tests come back with. They said my initial bloodwork could have come back like that bc of my age (37) and blood clot but they just don't know. Sending you big hugs - I hope everything comes back ok.

chance_encounters · December 2013

mommyof2boys922 said:

Thoughts and prayers!!!! And a huge hug!!! Please keep us updated!

Will do. Thank you

Valie18 · December 2013

T&P going out to you.

I think that @JulieSmiles gave some great advice. My little (20yo) brother has Down Syndrome and my parents did a really great job of identifying and taking advantage of the resources available as soon as they found out. I think that raising my brother is their greatest challenge in life. If your LO has DS it will be very difficult but also very rewarding.

A few brags about my brother:
- he is a brown belt in karate
- he works full-time (independently) at our local grocery store
- he enjoys technology and can work any gadget put in front of him
- he is studying baby sign-language to teach our LO
- he says he loves me all the time
- when asked what he would wish for if given three wishes his responses were to see our deceased granddad again, to always be himself, and to make the world beautiful

I hope that your LO is typical. At the same time my brother completed our family perfectly.

almendarez · December 2013

We were told our baby is high risk for down syndrome after our NT scan and the doctor recommended the MaterniT21 test for us as well. The hardest part has been waiting for the results, which we are supposed to get any day now...

We wont start preparing until we get the result. DH has younger twin sisters that are special needs (not down syndrome but on par) and his mom works with special needs children so his family will be able to offer a lot of knowledgeable support.. his sisters are also deaf so everyone already knows sign language too (pp: thank you for the sign language advice)

I would recommend surrounding yourself with family and friends or keeping yourself busy to take your mind off it and try not to worry.

MaidMarion25 · December 2013

Sending you T&P's! I have a cousin with downs and he is amazing! We are the same age and he is the happiest and sweetest person I know! DH is a special ed teacher and he is always coming home telling me amazing stories every day! However i hope your baby is healthy but no matter what you are going to be a great mom!

TheMrs820 · December 2013

My nephew had a 1 in 3 chance of being born with Down syndrome. He was born completely fine with no abnormalities.

T & P's for you guys.

chaysefaith · December 2013

Basically what everyone else. I started to skim the responses but I didn't see any actual direction in preparing if your baby DOES have Down's syndrome. I don't have any personal experience but I have heard WONDERFUL things about Gigi's playhouse. Look into seeing if there is one near you

katekat8721 · December 2013

sending you lots of love and hugs xo

LaRouge8382 · December 2013

I knew a woman who was told that her child would have down syndrome through her entire pregnancy and her daughter was born with no issues. Try to stay positive:)

LovetoLive614 · December 2013

I don't have any experience but I wanted to post to give you support. As hard as it is try not to stress too much until you know for sure. I do volunteer at the Down Syndrome Association in my city and it has been a very rewarding experience for me. I have met some really great individuals (both children and adults) who just happen to have down syndrome but it definitely does not define them. There is a lot of support and information out there these days. Keep us updated!

Pahialii · December 2013

T&P to you! My cousin had the same results (1:6) and her son, now 2, was born normal and is actually advanced for his age. My sister has a learning disability, not downs and not really on par with that, but growing up it was amazing what she learned once she was in the right special school setting.

LilyGracesMommy · December 2013

I had "bad numbers" with DS, I had an amnio, and everything ended up okay, but I remeber the anxiety, fear, and overall craziness I felt in between. Sending thoughts and prayers to you and your SO at this time, I grew up next to a boy with DS and my BFs brother has some special needs, because their parents strived to give them the best resources and be there for them , one of them is in a program at a local university, where he attends college classes and has an apartment with a roommate ( staff do check in on them) and the other is I believe still in highschool ( though he is younger) Both are able to be socially appropriate and funny, and they are people. They are not special needs in my eyes. I know when I was faced with the unknown it was nice to be able to think that a Downs diagnosis was not an end all be all. Sure, it is still heart breaking to think your baby is not what you expected, It's totally normal to feel "why me?" and mourn the loss of the baby you expected. I hope and pray your test ends up negative, but if you do receive a positive, to know that your baby can still be a happy, funny, productive, educated person.

((hugs))

Uptowngirl2009 · December 2013

I don't have any personal experience as I am a FTM but either way I know you will be an amazing mom no matter what challenges you might face. Sorry I don't have more helpful advice.

Julie&Micah · December 2013

I had odds like that after both blood draws with DD. Did an amnio, negative, she is fine. So even though it is hard (I know!) try to just keep going until you know for sure.
If you do get a positive result, start looking into local resources and support. Become knowledgeable. And (for any special needs) look into early intervention in your area! Early intervention with trained professionals makes a world of difference! This is my occupation, and I have seen first hand the great things that can come from a team working with and for a family of a child who has special needs!

flerlgirl · December 2013

Ts and ps for you

lifeisbetteronthered · December 2013

T&P for you.

I have a good friend whose eldest daughter (13yo) has DS. She is amazing. They worked with early intervention, and her parents are wonderful advocates for her. She attends school, and I see no reason why, in adulthood, she won't be able to work and live semi-independently. She is so loving, friendly and positive. I don't think they could imagine their family without her.

PP have mentioned reaching out to parents in your community for support and information. Find out what services are available, and advocate advocate advocate for your little one.

PP have also mentioned that the odds (though I understand why you are rattled) are still in favor of your LO not being affected with DS.

No first hand advice (my tests are next week), but T&P, and we are always here for your venting needs.

kjohnson1002 · December 2013

T&P's heading your way. How long before you know the results of the test?

chance_encounters · December 2013

kjohnson1002 said:

T&P's heading your way. How long before you know the results of the test?

The soonest I would know is next Monday, the longest is 2 weeks. My dr. Is actually a personal friend so I know she will call me the second she gets it.

chance_encounters · December 2013

Thank you all for your T&P and wonderful words of encouragement, they mean so much! I will update you as soon as I get my results

colllydon · December 2013

T&P for you!!

chance_encounters · December 2013

@LilyGracesMommy thank you so very much! My fear is not that my baby isn't perfect, because in my eyes they are no matter what. My fear is more of, will we be able to provide for this baby? Will we be able to give it everything it needs? This is our 4th child. We were not planning on this little blessing, but God had him/her planned for us. My husbands work does not provide insurance and I pay cobra right now, which will end in October. I am sure you can figure out my obvious concern there. My prayer is not, please make this baby normal, because the baby will be born how ever God intended. My prayer is, please help us provide for this baby if it is special needs. I am a research a-holic but I am going to try to hold off on my research until we receive the M21 results because, I know there is a risk of a false positive on the original test. I know there is not only good info, but scary information out there too.....I am babbling, sorry. My point is, Thank you

fsumom · December 2013

I don't have any experience as we've had zero genetic testing done as I'm only 31. I just wanted to send your T&P's! Please keep us updated!

xnbride · December 2013

Big hugs. You will be a great momma to a baby with DS. I would talk to your pediatrician for some resources and maybe consult with the local regional center as they often have alot of resources that are not advertised openly. Most communities have a great deal of support and resources and it will be helpful to get plugged in early. There are also support groups offered in most places as well where you can talk to other parents and get their expertise and perspective.
There are also some great online resources as well. Check out babycenter groups. They have some specific to being pregnant with a baby with DS and raising a child with DS
https://community.babycenter.com/find/sa?q=down syndrome?q=down syndrome

Lianneferrick · December 2013

No experience as I am a FTM but T&Ps for you!

luvin20bball · December 2013

I had a high risk for our son. We had growth ultrasounds every month. He was born in Oct of 2012 & he is a normal 14 month old. I was surprised that our risk was high being that I was 25 when i was pregnant but thank god he came out perfect!!

puttyeast · December 2013

I love your attitude about this news, as it makes so much sense to be concerned about how you can support the child, not that you are worried about them being not "normal". Either way you will be a loving mom to this baby and that is what he/she will need most. Thinking positive thoughts for you!

MrsRahl · December 2013

I will definitely be adding you to my prayer list. God bless you, and you WILL be a fantastic mom regardless of the outcome. My step brother is special needs and there isn't even a diagnosis for what he has . They've studied him his whole life, but he is a sweet, kind, and fairly independent young man who now lives on his own because of early therapy and our wonderful family. I'm a firm believer in "life and death" being in the tongue. Speak positive things over that little one every day

chickpea912 · December 2013

Missed the original tag in this thread - I received a 1:41 chance of DS at the NT scan, did the amnio (I needed the definitive answer that that would give me, vs the blood test), and I just heard today that the full report is normal - no extras, no missing, everything in perfect pairs.

And then the genetic counselor mentions additional testing - analyzing the chromosomes on a microscopic level or possible testing for Noonan syndrome, since the NT measurement was high. And now I'm back in this world of worry.

I totally get where you are at. I had a 2.4% chance of the baby having DS, and I couldn't pay attention to the 97.6% chance that all was just fine. Same for you - 1:6 is high, but that is still way in your favor. Good luck - I hope you get answers soon!

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