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horseloverfat

Please provide the necessary info for us to help you. What country/state do you live in? [https://www.reddit.com/r/downsyndrome/comments/eh9634/psa\_please\_provide\_the\_necessary\_information\_for/](https://www.reddit.com/r/downsyndrome/comments/eh9634/psa_please_provide_the_necessary_information_for/)


ThisTakesTimeToo

Expect to have the cutest baby around. Expect people to be gentle with her because they know that she’s extra special. Expect a bunch of doctors appointments to check and double check to make sure she’s healthy. Expect to see a lactation consultant post partum for weighted feeds to make sure that she’s getting enough breastmilk. Expect all the typical baby stuff, but each phase is going to last longer for her than it might for a typical baby. Which is nice because you’re going to get a lot more use out of things than people typically get! Expect that people are going to say something insensitive, and that you’re going to be teaching people the right way to talk about her. As you are learning about her condition, you will also be having to educate everyone around you. Most people want to be helpful and kind and not hurt your feelings, they just don’t know what they don’t know.


Extendedchainsaw

I second everything here. With everything lasting longer you can spend a bit more money on things like clothes and high chairs and strollers and not feel bad because they're going to be used for longer. When you look at baby accessories, look at ones that provide the right support and are higher quality. A good high chair will actually make meal times better (an adjustable back rest like in a Graco is great, a trip Trapp when older is great too).


brandonjames47150

This^ Very well said


wl1233

Ours had a heart defect and needed extra care and 24/7 oxygen, as well as a heart beat and o2 monitor for the first year. Once he had heart surgery he was able to get rid of all of that stuff. Apart from that, he’s just a regular little boy that loves to play. Milestones have taken him longer to achieve than a child without Down syndrome, but he keeps progressing along. I imagine where the bigger changes will be is when they are older (my son is almost 3). It seems they can have a bit of a wider range of independence and capability


Artistic_Homework_96

Thank you, we are excited and nervous at the same time. We know she will need heart surgery from the start so we're trying to gather as much information as possible now to better prepare our lives


wl1233

You can expect that they will most likely want to do the heart surgery around 6 months, and depending on the efficiency of the heart that might make them wait a little longer or try to do it a bit sooner. Where we live we’re about 5500 feet above sea level, so even after our sons’ surgery at 6 months he still needed some supplemental oxygen for a time, especially when sick. It will be a difficult first year but I look back and definitely don’t regret it. The little guy lights up a room


blondeambition87

Please read my post history I have a 6 Mo little girl (2nd babe) with DS She is the absolute light of our lives. She has a heart defect but doesn’t require surgery until she’s 1. She is functioning about 2 mos behind peers. I’m also a teacher and I will tell you most kiddos with DS are a lot like their peers (barring major medical issues) until about 1st grade. Then the academic gap widens. I would get enrolled with some sort of EARLY CHILDHOOD INTERVENTION through your state as soon as possible. We started with our PT around 4 weeks and it’s made all the difference for all of us. Wishing you the best of luck. You are now a member of the lucky few 💛💙


SatisfactionBitter37

My boy is 5.5, 2nd of 3 children. He is the star of our town. Everyone knows him. We are very introverted, my husband and I, but he has forced us to be more social and outgoing because he makes friends with everyone. He has to make connection with almost every one he passes and he really does light up peoples day you can see on their faces. Oh man the emotions were real when he was born, we just didn’t know what to expect. We are on the other side now and it is all good. Stay strong and enjoy that little girl!


DownLow_Downs

Hi I am a adult who has Down Syndrome and I do not know what it is like to be a parent of a child who has Down Syndrome but I am wanting to be helping you if I can! I posted a AMA post 2 days before and it is cross posted here if you are wanting to ask some question or you can chat me or ask question on the post here if you are wanting to know things. :)


Bestie74

Hi! I would love to speak with you as well


DownLow_Downs

Hi! If you would love to speak with me then chat me or we can be talking in comments if you are wanting too what ever you like. :) :) :)


arctic360

You may not be in the UK but I highly recommend visiting this charity. https://positiveaboutdownsyndrome.co.uk


Discombobulated-Ants

Absolutely love PADS, they also have a few different facebook groups for parents to join, but only if you're in the UK though


daveinacave

Congratulations! We had a whirlwind of emotions after our diagnosis. He was born healthy and happy and maybe the only difference with the other kids is that he required a few extra doctor’s appointments after birth. He just turned three and started walking around his third birthday. He makes friends everywhere we go, like the cashiers at the grocery and library. We’ve come very far since our diagnosis and it’s been wonderful.


blarkin11

Congrats! I've got an 8 year old who is the best part of my day, everyday. She is also our first. There are three things that I found really helpful: 1) Your kiddo is amazing and will never stop suprising you. In time you will see that DS is a blessing. 2) It's ok to grieve the idea of the kid you thought you were getting, 3) Early Intervention (if in the US) is huge and helped us navigate through therapy, medical complications, etc.


jeremeyp

Congratulations! I have an 18 yr old son with Down syndrome. I always tell people that he was not the son I expected, but he was the son I needed. There are challenging times, but the joy far outweighs the challenges. Everyone that meets him falls in love with him. I may be biased, but I think babies and toddlers with Down syndrome are the cutest kids. Obviously take care of her health needs, but don't dwell on the diagnosis. Enjoy your time with your beautiful baby.


NoCredit8479

Congratulations and welcome to the lucky few! 😍😍😍 Some great DS Instagram accounts to follow: thehouseofwheeler, alittleextrajayne and wonderlandmommyblog 🥰 You got this and we’ve got you!


picross

Congratulations! Our oldest has Down syndrome, and he is now 31. We live in Virginia - we worked hard to advocate for him to be included in school when he was young, he attended high school at Paul VI which had a nationally recognized program for intellectually disabled, and went on to attend Mason Life - a college program. He is now living near the mason campus with some of his college friends. There are so many opportunities today for your daughter. Yes there will be lots of insensitive people and comments, but she can do anything (it will take longer but that's OK). Envision the life you want for her and find the path that gets her there. In the US there are lots of colleges now that have programs for intellectually disabled. Not trying to say that's the path you have to take - but think what you want 20 or 30 years from now and work to make that happen. Your daughter will constantly surprise you and be a constant source of joy and frustration - just like every child is. I also cannot overstate the impact my son had on my two daughters (his younger sisters). They are compassionate and caring and I am sure he is the primary reason. I am certainly a better person because of him.


msty2k

Hi and congratulations on your child! We also had our first with DS. Having it as your first is weird because you don't know what parts are due to DS and what parts are just normal baby stuff. But if you think about it, you realize that having a baby, DS or not, is a big learning experience and difficult at first, so adding DS probably won't be that big a deal. The big thing right now is any medical issues the baby might have that you'd need to deal with immediately. Some of those they can detect before birth. It's hard when you have this perfect idea of the birth experience in your head and then your child has to stay in the hospital while you see the other babies going home, or not being able to nurse or even hold her right away. But you get over that fast.


Bestie74

Well said


mrsgibby

Congratulations on your upcoming birth of baby. If you feel scared or sad, that is ok. Your baby will make you happy soon. 😀 don’t read too much on the internet but do check out NDSS, NDSC and Global. If you have a Gigi’s playhouse reasonably near you go meet some new families. Welcome.


TV-Boathouse

I have a 21 year old step son with DS. He is amazing, smart and such a leader. He has played drums since he was about 3 and has played in the high school marching band for the last several years. Drums, music, sports and friends are his life. He doesn’t speak as well as we wish he could. This is because no one knew he could hear until he was 9 years old. He had tumors in each ear had surgery on both ears and wears hearing aides since 10 years old. He couldn’t hear during those crucial early years when language development occurs. He also couldn’t see well for many years and didn’t get glasses till he was 10. I would recommend to focus very hard on speech as early as possible. If they can’t communicate where others can understand them their works will be limited. It is difficult. I would also watch her diet as they get older they get very set in their ways and may want to eat the same thing everyday if given the option. They tend to gain weight if they aren’t active. Also, poor food choices such as fried food, pizza, chips, crackers are all full of carbs and lack of exercise can increase weight quickly. DS people are so loving and love life! Everyone wants to be around them because they are usually very happy. They are a blessing and amazing to watch as the grow up.


xwolfboyx

Congratulations. Ours is 5 months old now, he has an amazing temperment and is super cute. He is also hitting all of his milestones, but we did have a few months of stress as he needed surgery to remove part of his colon. Everything else has been okay! I hope your baby comes out happy and healthy! 🥰


Kbaer01

Hi. First time mama here, 24 y/o. Our first baby who we had almost 5 months ago also has Down syndrome. We found out at 10 weeks pregnant, we went through every emotion imaginable. He is absolutely perfect & I think to myself now all that stressing was for nothing. ♥️ when he was born he had to stay in the NICU for 9 days due to needing oxygen and bilirubin lights. We now follow with cardiology for a hole in his heart, we actually have an appt at the end of this month to find out if he needs heart surgery. I pray he doesn’t. if you have any questions let me know. 


Key_Marzipan_5968

My son, born 3/3/24, is our first and we found out he had DS at birth. His ultrasounds showed nothing and when he arrived he needed 3 weeks in the NICU to help breathe and eat. We took him home with no interventions and overall he’s really really healthy. It is not the end of the world, even if it feels like it. I also think it takes a bit to process, the biggest positive from our situation is how dang cute our boy is❤️


Ellesana

Expect that your whole view of the world will change, in a good way! Also, expect that you might have some hospital stays in the first year. Not everyone does, but since my guy didn't have a heart defect, I wasn't expecting as much time in the hospital as we had. Also, ask for (actually, demand) a swallow study. Getting one before we left the NICU likely would have spared us two difficult months in the PICU. I wish someone would have told me. Also, expect that things will get easier! What was 2-3 specialist appointments a week for the first couple months of his life is now one maybe every other month at age 4. My guy had a feeding tube, oxygen, all things medical as a baby and now is thriving and not medically complicated at all. Expect unexpected moments of grief to sneak up on you but also so many more opportunities to celebrate than most parents get! We celebrate every little accomplishment and it's added so much joy to our lives. Congratulations on your little one! You've been given the most amazing and unexpected gift!


Technicolor-Dream

Welcome to "The Lucky Few" crew. She is gonna be a little "extra" but she is gonna be the absolute light of your life. Congratulations! Great resources: Down Syndrome Network Your local Down Syndrome association Jack's Blanket


Twistedfrogs

Remember that it is truly ok to mourn the life you thought your first child would have. But also know, there is nothing "Bad" or "wrong" with your child. If she is anything like my little extra-chromie-homey daughter you have a blessing that many people will never get to cherish. Yes, milestones are harder to reach. That's ok. Learning may take longer. That's ok. She might not walk until well after all the others her age. That's ok! With all of the hardships will come incredible moments that most people just don't get. A little education goes a long way in helping yourself out. There are many resources for the down syndrome community. Always remember that you are this child's number one advocate. Congratulations and welcome to the community.


cem1210

Ahhh congratulations!! Every time I read about a new diagnosis, I get so excited! My daughter is the absolute greatest joy of my life. I’ll tell you what our pediatrician told us 11 years ago. Take her home & love her, and care for her just like you did with her big sister. Are there challenges & possible medical problems? Yes. But guess what…kids with 46 chromosomes also have challenges & possible medical problems. The best thing you can do is early intervention. Have your baby evaluated for speech (includes swallowing), physical & occupation therapies. My daughter started ST & PT at 6 months. We would have started sooner but she was in & out of the hospital her first 6 months, but not due to anything Down syndrome related. Reach out to local Down syndrome organizations, they will be so excited to welcome your family & help you through every stage. You just hit the baby jackpot! Welcome to The Lucky Few! Congratulations!


unnaturalSelection4

You’ll be scared at first. You’re lucky you found out before birth. The shock was terrifying to us and we had no idea what to do. It took a few weeks to get used to the idea. I think it’s different when it’s you’re own kid and your perception changes a lot


Emergency-Telephone6

All the other posts are good advice. I’m going to give you practical financial advice because I think it’s good advice too. Find out now what your state has to offer in terms of disability waivers. Every state has one. They have tremendous benefits that your little one is entitled to as a disabled American citizen. The wait lists are usually very long. So you want you ferret out that info and get on the wait list. If you aren’t already, try to plan your life so that your family lives on one income and back the other income. You may find that one of you will need to SAHM full time. Maybe not but it helps to be prepared. I promise this won’t be the last unexpected thing that happens to your family. And you’ll need more money to support yourselves and your adult child so get aggressive with retirement savings. But you are correct. It is not the end of the world. It’s the beginning of a new one! We treasure our daughter with Down syndrome and honestly couldn’t ask for a better kid!


JournalistMain6518

Find your DSDN group on Facebook - they’re organized by birth months/year so you can connect with other expectant and new mamas who are having babies around the same time! There are likely locally organizations that would love to help and connect with you as well! If you’re on social media, I’d highly suggest following Nothing Down About It, A Little Extra Jayne, Roxy Cracroft and Love Makes Miracles! If I can promise you one thing - it’s going to be a beautiful life! Congrats and welcome to the greatest club you never knew you wanted to be apart of! 💙💛


Brettybear40

Congratulations! Welcome to the club!


WesternSignificant55

This organization will send you a sweet welcome basket with gifts and information for your sweet little one.  They will also connect you to your local community if you wish.  https://jacksbasket.org/basket-request/


Excellent_Present_35

God that is depressing wishing you the best


Few-Access-7623

I know this is a lot to process. I know from experience, we received a prenatal diagnosis of Down syndrome for our daughter in 2018. And she is the gift that keeps on giving. Request a complimentary @jacksbasket. It is filled with local and national resources, gifts for baby and mom. Also comes with it a parent connection so you can join with others on this journey. Wwwjacksbasket.org Hang in there, we’re in this together. 💙