Down Syndrome Community
advice needed
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This forum is for questions and support regarding Down Syndrome issues such as Dental Problems, Communication Problems, Developmental Disabilities, Hearing Loss, Hypothyroidism, Immune System Problems, Learning Disabilities, Joint Problems, Muscle Weakness, Respiratory Disorders, Seizures, Sleep Apnea, Weight Problems.

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advice needed

Hi I'm 16 wks pregnant and just found out my baby has downs syndrome I really don't know what to expect and wud be really greatfull if anyone Cud share there experiences wiv me. Thanks x
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1809109_tn?1331807377
Honestly I think first you should talk to your OB. In some cases DS babies might have an enlarged heart. First thing to make sure is that right now your baby is otherwise healthy and you can expect a healthy pregnancy. Then perhaps you should talk to a genetic counselor. People with down syndrome are at higher risk for thyroid disorders, obesity, diabetes, and cardiovascular problems. This doesn't mean you're baby will have all or any of these, but you may want to take this into account and start now at trying to have the healthiest environment possible for a baby to grow up in. Also this is something very important to watch out for, I suggest looking up Thyroid disorders and getting to know the symptoms of Hypo vs hyper. Again, not 100% chance that your baby will get one of these problems in their life, but it's something to watch out for.

Finally I suggest trying to find a community group near you -of mothers with babies with DS. My nephew has autism and sometimes it's really hard for my SIL and brother to deal with. Having friends who have to deal with the same freak outs, the same kind of problems really helps them feel that 1- they're not horrible parents and 2- someone else understands. I can only speak from what I've seen, but seeing them with friends who go through the same things in real life has made an obvious difference in their confidence and sometimes their sanity.
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Avatar_f_tn
Hi, I found out at 11 wks that there was a problem with my baby, this was only 10 months after losing my first baby to pre eclampsia so for something to go wrong again was absolutely devastating. By 5months pregnant I was over the shock and desperate for my baby to survive. I was told there was a high probability she had Edward's syndrome so I had an amnio at 29wks. This confirmed Down's syndrome which was actually great news because I knew my little girl had a future.. She was born at 37wks weighed 4Ibs 10ozs and she had 2 holes in her heart, an ASD and a VSD, both fixed with surgery when she was 7 months old. She has a feeding aversion so she is fed via gastostromy tube, she is slowly getting used to some solids.
My daughter will be 4 in July and she is amazing, we take whatever life throws at us and we meet it head on, it's a struggle sometimes but that is the same for every other parent . We have quite a lot of hospital check ups but they're just part of our normal life and they fit in around her life. She has horse riding lessons, gym club,and she goes to playgroup 3 mornings a wk she has lots of friends and life is wonderful. I wish you all the luck in the world and I would just advise you to take each day as it comes, you will be just fine x    
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Avatar_f_tn
Thankyou its wonderfull to hear someone being so positive we are not getting a lot of that at the moment x
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Avatar_f_tn
Please stay positive, it's all about education to overcome fear. Fear for a parent or fear from other people who have no idea how incredible these children are. My daughter will start mainstream nursery in September and she is learning so much everyday. Everytime she learns something knew I'm so proud of her because she puts in so much effort. You will have set backs, everybody does, but if you do your best for your baby you will be rewarded a thousand times over. I would love you to keep me updated with your progress, and any questions you have,I will do my best to answer truthfully. x
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Avatar_f_tn
Thanks x
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Avatar_f_tn
Hi im 23 weeks and found out my baby has down syndrome, his heart didnt fully form, his stomach is full of fluid and is at high risk with only 10% chance of survival:( im just looking for some advice n feedback. Went n got checked yesterday cuz he didnt move for a few days but his little heart is still going:):):):)
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Avatar_f_tn
Hi, it's a tough one to advise on, I was told so many different things at every scan I had that it was difficult to know who or what to believe. At 13 wks I was told my baby had cysts on her brain that were only present with Edward's syndrome, at 20 wk scan I was told her heart was fine then at 23 wks it wasn't , an ASD and a VSD were found. They also told me they couldn't find valves in her heart. Another scan revealed she didn't have a stomach, an hour later she did! All very scary and at the end of it all most of it wasn't correct. If I were in your position, I would sit tight keep having your scans and check ups and keep hoping for the best because as wonderful as modern medicine is, these little babies are fighters and you have to fight with them. Wishing you all the luck in the world, stay strong x
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2118085_tn?1334704987
Hi!  First congratulations!  I too have a little boy with Down Syndrome.  He'll be three in June.  I found out at 17 weeks.  He has added so much to my life.  He has been a true blessing.  Yes there's a 50 % chance of a heart defect (almost always fixable) and they will be able to check all of that while you are pregnant.  Babie's (even Down's babies) are very resilliant.  My son hasn't had any surgeries and we've only been hospitalized for a few days with the Swine Flu.  He has therapies on Mon-Thurs which are provided by the government no matter what your income is!  They will take care of all of it for you.  All you have to do is go to the meetings and get a schedule that works for you.  If you want, they either come to your home, or to the daycare if you are working.  Also, being a special needs mom, it has introduced so many amazing women (and men) that I would have never met otherwise.  My son is walking, can talk, can show you where his eyes, ears, nose, etc is, breastfed perfectly well, etc.  Did they tell you which type of DS it is?  Most common is Trisomy 21 which is what my son has however there is 13 and 18 as well.  Those two our more rare and come w/ alot more difficulties.  91% of people abort when they find out their unborn child has Down's.  That's astounding to me because he has been such a blessing, and in no way a mistake.  His accomplishments are all the more rewarding because of all of his hard work.  I can't tell you how many people at church and daycare know Evan before they have met me.  That's how many people's lives he has touched and he can't even speak a full sentence yet.  I pick him up from school and people I do not know at all say "Bye Evan" or "Oh, you're Evan's mom!"  This is a good thing, not a bad one.  My email is ***@**** if you want to talk.  Congratulations!
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2118085_tn?1334704987
Stay positive.  They detected an atrial septal defect w/ my son Evan (almost 3 w/ Down's) and when he was born, his heart was perfect.  Things change, Down's babies are very resilliant.  I will pray for your little guy.  They are commonly underestimated.  Let me know how he's doing and if you have any questions, my email is ***@****.  Take Care and Congratulations.  You're in for the ride of your life.  :)
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Avatar_f_tn
Hi, Just to add to discussion...
Trimosy 13 ad 18 are Edward's syndrome and Patau syndrome, both unfortunately are incompatible with life. There are usually definate signs of this on scans, such as clawed hands and cysts on the brain. I was told my baby may have Edward's because cysts were found so I had an amnio at 28wks. This confirmed Down's thank goodness! Scans are a good guide but not 100%. I could never be without my daughter she has taught an awful lot of people an awful lot about life. These children are amazing and if we ever get pitying stares from people, I feel very smug, because they would be jealous if they knew just how great life is.
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Avatar_m_tn
I just spent an incredible father's day with my 17 year old daughter with DS. I cannot imagine life without the richness she brings to it.

I'm not trying to sugar coat it. It's not all easy, but I always just remember - she's 99% pure kid, and 1% DS. She's also 100% teen rebellious right now, except when she's so sweet I can't stand it. Guess what - all my friends with teenage daughters see the same thing, and their kids don't have DS.

For a little perspective on things, check out:

http://www.our-kids.org/Archives/Holland.html

PM me if you would like . . . . .
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Avatar_n_tn
First of all, Thank you. Thank you so much for giving back my strength tonight. Knowing that there are kind, strong and wonderfull people like you and all the others I have read comments from have given me back my faith in humanity. My one year old niece was born with DS. My family have been nothing but icrediable with her. She is adored more so then any other child I know. I can not describe how much I love her, its a task more impossible then capturing an ocean with cupped hands. When I hear ignorant and hurtful comments I can not help but be wounded. But knowing that you all will stand alongside me as I fight against prejudice has given me enormous strength. I honestly wish the world had more people like you all. No matter what I do in life I will never be able to repay my neice for the love she has given myself, my family and my friends. She has mended broken relationships, ended longstanding disputes and brought our family together again. I will always be grateful to this extraordinary child for all she has done. Thank you all for the support.
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Avatar_f_tn
My niece is two years old and she has DS, she is very adorable and also very smart. She's little but she appreciates things that us "normal" human beings dont. Good luck with your baby for that baby will teach you a lot of things as well..
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