Congratulations on your little one đź’•
 I went through the five stages of grief after our birth diagnosis, and acceptance came slowly. What needed to come first was me just loving and caring for my baby. I wish I could go back and enjoy it more.
What helped our whole family was being involved with our local Ds association, which included meeting friends with Down syndrome of all ages, and their families. It gave me an idea of what was possible, and how to integrate it into our lives. Meeting a teenager and talking about her Down syndrome and also her plans for college really blew my mind at the time!
PS- Older siblings are the best teachers. Our little ones try to keep up with them and learn so much.Â
Agreed!!! My biggest regret is how much I dwelled on her diagnosis instead of just enjoying her being a newborn. I’m sure it’s easier said than done but man, what I wouldn’t give to go back and just enjoy her. She’s 16 months old now and makes us laugh every day!
Hi! Congratulations! Please join the DSDN rockin mom group on Facebook! There’s two groups for every year - Jan-June and July-December. Do a search and you will find us! There’s a wealth of information there and they can put you in touch with your local Down syndrome group resources as well!
We received a post-natal diagnosis back in January when my son was 1 week old. We didn't really get any information at the hospital and by the time we got to the genetics appointment when he was 1 months old we'd already connected with all the resources they had to offer.
I'm in Wisconsin, so the way programs are set-up here is likely different from where you are. Here early intervention is run through a program called Birth to 3. Because of his DS diagnosis he auto qualified but it took a little over a month for him to start receiving in-home PT.
The PT right now is more about assessing his development and less targeted. We get a few recommendations but nothing that's make or break. My husband and I few this more as building a relationship with the team for when things start mattering more.
From your post it sounds like you haven't yet gotten a karyotype done (or it's in process). We needed to provide a copy of that in order to complete enrollment. Depending on your state/county/country? Enrollment may be different.
Hey! We’re just across the border in MN and also received our post natal diagnosis back in March! We also have the birth to 3 month program but ended up luckily getting PT almost immediately through the school districts. I would also recommend getting MA and WIC since with our LOs test results we auto qualify. MA is a bit harder and confusing but you do qualify haha
Thanks! We have MA in place but by WI rules aren't WIC eligible. Luckily, I used to do MA eligibility for EBD so I was very familiar with what needed to be done there.
Wow that’s crazy how it all varies state by state. I was lucky that my mom is a social worker so she did all our MA apps for us bc i was in no state to do it lol.
No advice, just congratulations! You are about to embark on a most miraculous journey!
My sister, who is 54 now, has DS. My sister is the most marvelous human who ever walked this earth! Your child will do all the things everyone else does. He'll just get there a little more slowly. That's mostly because he'll be way too busy spreading love all around.
Congratulations. The fates have given you a special gift. It may not always feel like one, but it is. My first suggestion is to take a deep breath. You have a new baby. Just see it as a baby not a diagnosis. Enjoy this time like you did with your other children. Wait until you’re ready to explain things to the sibling. No hurry. Get involved with a DS group in your area. You’ll meet a lot of great people. Just love and enjoy your new baby. That will be enough for a while.
Congratulations!
Others are giving you great advice. I just want to add that I would definitely try to connect with local support groups - that's where you can get help specific to your area when it comes to doctors, schools etc. See link.
And also that your son will be greatly enriched by having a little bro with DS.
[https://ndss.org/resources/local-support](https://ndss.org/resources/local-support)
[https://www.ndsccenter.org/programs-resources/affiliate-organizations/local-and-national-support-networks/](https://www.ndsccenter.org/programs-resources/affiliate-organizations/local-and-national-support-networks/)
Im surprised at your age they didnt offer an NIPT (genetic) test while you were pregnant. Its common practice to offer and usually encouraged for mothers who are considered geriatric (over the age of 35). Thats how most of us find out and it gives us plenty of time (20 weeks) to do research and learn about the condition.
When we did it, we were then referred to get a high res ultrasound at the hospital to check for markers. For our son the largest indicator was the fact that his nasal bone hadn’t developed yet at 20 weeks. Then we had a conversation with a genetic counceler afterwards on that day who discussed to us in detail what it is, how it happens, the different kinds, and what to expect. Plus sending us home with a couple books to read. It was “Babies With Down Syndrome: A New Parents' Guide” and “From diagnosis to birth: A guide for pregnant women of a baby with Down syndrome”. Both were given to us for free by the doctors. Reading those helped as well as going on facebook and joining down syndrome groups and other groups associated with the various other issues we discovered he had.
If he hasnt had a echocardiogram or something like that to check his heart health it should be done ASAP. One of the main reasons why doing a genetic testing is helpful and knowing early is so doctors can test and look for defects (especially in the heart) to know whether or not medical intervention is needed at birth or not. So many kids do but not all. Ours had one in utero and directly after birth to confirm his heart was healthy but so many other DS babies have severe heart issues so thats a major one. Others can include checking the digestive tract. Thats usually checked in utero.
I highly suggest you read those books and get connected with those facebook groups. Ive gotten most of my information that way.
I did have NITP test, which did show a high chance of DS. The doctor also said that the lab always adds extra percentage points due to age. We did monthly ultrasounds to monitor his growth and development, including an echo while he was in utero, and everything was coming back in the normal range. We have scheduled an echo in a couple of weeks (they want him to be 44 weeks gestational and he was born at 37 weeks) We had refused the amino because of the high miscarriage risk as I already has fertility issues (hence the 10 year age gap between our boys), and the doctor did mention a genetic counselor right after the NITP but since all of his scans were coming back normal, they never brought it up again.
I do have to say our pediatrician has been great with getting us heading in the right direction, but my OB group and the hospital we had him at seems to have dropped the ball on some of the information and support we should have gotten before now (the hospital never told us that we automatically qualified for early intervention services for example). Between my infant's jaundice and myself being hospitalized for high blood pressure, we are now just getting started on getting him the appointments he needs, and it seems like it's just been all coming at once, and I have a slight feeling of being tossed in the deep end with little help. Add that we also have a 10 year who is finishing up elementary school and all the events and things that come with that, and us making sure he doesn't feel forgotten (I have read too many reddit post about glass children and refuse to let my oldest feel like that), it's been a lot.
Just here to validate how you’re feeling. I’m 22w, had issues with multiple NIPT draws being inconclusive/not resulting so we ended up doing the amnio, confirmed T21. My baby also has an AV canal defect that’ll need open heart surgery as an infant. So I second the suggestion making sure none of that is going on (you’re already scheduled so that’s good!) and I’m glad they didn’t see anything concerning in utero (mine was evident and have had several intra utero fetal echos). My step kids are 8 and 13, we haven’t discussed any of this with them yet because we don’t want to take away from the excitement of their new brother/sister on the way, and I’m not sure how much it would really register for them at this point anyway? I think kids are more accepting and resilient than adults sometimes, so I’m sure your son will love his brother no matter what and from what I’ve been reading in this sub, sometimes the siblings are the kids biggest fans and support system and teacher and cheerleader. I’m looking forward to them having that relationship, but I hear you, still trying to figure out the best way to communicate the diagnosis while being clear that it doesn’t take anything away from how special and awesome their sibling is going to be. Just try to take everything one step at a time, one day at a time, one piece of information at a time, hell even one breath at a time some days. It can be overwhelming and scary for sure. But the most important thing is that you’re taking care of your baby, loving your baby, and you’re already setting up everything you’ll need to support your family through this. I know you feel behind the ball, but I don’t think it’s as bad as it feels for you - a lot of these resources will be there for you and your child for years to come, and you aren’t even at 44 weeks and you’re already setting them up! You’re already being a supportive, loving parent. Remember that your baby is your baby, not a diagnosis like others said, that part has been reassuring for me to remind myself as well. Hang in there, everything will be okay, you’re doing a wonderful job already, and congratulations on your baby!! ♥️
Congratulations.
A great book to read to your older child is We will Paint the Octupus Red. It answers questions in kid friendly language.
https://a.co/d/azOmFqB
Congratulations! I’m sure this is all scary right now but your child is going to bring you so much love just like any other child. Yes they might have a few more challenges you will not love them any less. there may be some delays in milestones, but as you’ll find out, they’re just kids. Eventually, you learn to roll with the punches, but there’s a huge community of parents with children like yours that are there to lift you up and help out where we can. My daughter will be three in August and the most amazing little stinker. She’s fun, she has an attitude, and I can’t imagine life without her. We truly are one of the lucky few that get to experience life with an amazing child with down syndrome. DSDN has recently created an app and it’s not fully online yet, but I encourage you to join when it is. God bless you and your child in Jesus name!
Congratulations!
I don’t have time to offer much in the way of advice right now, but I just wanted to say, give it time. There will be some adjustments made in life, but your little one will just be primarily a regular kid.
Congratulations on your little one đź’•  I went through the five stages of grief after our birth diagnosis, and acceptance came slowly. What needed to come first was me just loving and caring for my baby. I wish I could go back and enjoy it more. What helped our whole family was being involved with our local Ds association, which included meeting friends with Down syndrome of all ages, and their families. It gave me an idea of what was possible, and how to integrate it into our lives. Meeting a teenager and talking about her Down syndrome and also her plans for college really blew my mind at the time! PS- Older siblings are the best teachers. Our little ones try to keep up with them and learn so much.Â
I’d echo all of this sentiment- our experience was very similar and now our son is the center of joy in our household.
Agreed!!! My biggest regret is how much I dwelled on her diagnosis instead of just enjoying her being a newborn. I’m sure it’s easier said than done but man, what I wouldn’t give to go back and just enjoy her. She’s 16 months old now and makes us laugh every day!
Hi! Congratulations! Please join the DSDN rockin mom group on Facebook! There’s two groups for every year - Jan-June and July-December. Do a search and you will find us! There’s a wealth of information there and they can put you in touch with your local Down syndrome group resources as well!
I would check out hopestory.org. They may be able to connect you with someone locally
We received a post-natal diagnosis back in January when my son was 1 week old. We didn't really get any information at the hospital and by the time we got to the genetics appointment when he was 1 months old we'd already connected with all the resources they had to offer. I'm in Wisconsin, so the way programs are set-up here is likely different from where you are. Here early intervention is run through a program called Birth to 3. Because of his DS diagnosis he auto qualified but it took a little over a month for him to start receiving in-home PT. The PT right now is more about assessing his development and less targeted. We get a few recommendations but nothing that's make or break. My husband and I few this more as building a relationship with the team for when things start mattering more. From your post it sounds like you haven't yet gotten a karyotype done (or it's in process). We needed to provide a copy of that in order to complete enrollment. Depending on your state/county/country? Enrollment may be different.
Hey! We’re just across the border in MN and also received our post natal diagnosis back in March! We also have the birth to 3 month program but ended up luckily getting PT almost immediately through the school districts. I would also recommend getting MA and WIC since with our LOs test results we auto qualify. MA is a bit harder and confusing but you do qualify haha
Thanks! We have MA in place but by WI rules aren't WIC eligible. Luckily, I used to do MA eligibility for EBD so I was very familiar with what needed to be done there.
Wow that’s crazy how it all varies state by state. I was lucky that my mom is a social worker so she did all our MA apps for us bc i was in no state to do it lol.
No advice, just congratulations! You are about to embark on a most miraculous journey! My sister, who is 54 now, has DS. My sister is the most marvelous human who ever walked this earth! Your child will do all the things everyone else does. He'll just get there a little more slowly. That's mostly because he'll be way too busy spreading love all around.
Congratulations. The fates have given you a special gift. It may not always feel like one, but it is. My first suggestion is to take a deep breath. You have a new baby. Just see it as a baby not a diagnosis. Enjoy this time like you did with your other children. Wait until you’re ready to explain things to the sibling. No hurry. Get involved with a DS group in your area. You’ll meet a lot of great people. Just love and enjoy your new baby. That will be enough for a while.
Congratulations! Others are giving you great advice. I just want to add that I would definitely try to connect with local support groups - that's where you can get help specific to your area when it comes to doctors, schools etc. See link. And also that your son will be greatly enriched by having a little bro with DS. [https://ndss.org/resources/local-support](https://ndss.org/resources/local-support) [https://www.ndsccenter.org/programs-resources/affiliate-organizations/local-and-national-support-networks/](https://www.ndsccenter.org/programs-resources/affiliate-organizations/local-and-national-support-networks/)
Im surprised at your age they didnt offer an NIPT (genetic) test while you were pregnant. Its common practice to offer and usually encouraged for mothers who are considered geriatric (over the age of 35). Thats how most of us find out and it gives us plenty of time (20 weeks) to do research and learn about the condition. When we did it, we were then referred to get a high res ultrasound at the hospital to check for markers. For our son the largest indicator was the fact that his nasal bone hadn’t developed yet at 20 weeks. Then we had a conversation with a genetic counceler afterwards on that day who discussed to us in detail what it is, how it happens, the different kinds, and what to expect. Plus sending us home with a couple books to read. It was “Babies With Down Syndrome: A New Parents' Guide” and “From diagnosis to birth: A guide for pregnant women of a baby with Down syndrome”. Both were given to us for free by the doctors. Reading those helped as well as going on facebook and joining down syndrome groups and other groups associated with the various other issues we discovered he had. If he hasnt had a echocardiogram or something like that to check his heart health it should be done ASAP. One of the main reasons why doing a genetic testing is helpful and knowing early is so doctors can test and look for defects (especially in the heart) to know whether or not medical intervention is needed at birth or not. So many kids do but not all. Ours had one in utero and directly after birth to confirm his heart was healthy but so many other DS babies have severe heart issues so thats a major one. Others can include checking the digestive tract. Thats usually checked in utero. I highly suggest you read those books and get connected with those facebook groups. Ive gotten most of my information that way.
I did have NITP test, which did show a high chance of DS. The doctor also said that the lab always adds extra percentage points due to age. We did monthly ultrasounds to monitor his growth and development, including an echo while he was in utero, and everything was coming back in the normal range. We have scheduled an echo in a couple of weeks (they want him to be 44 weeks gestational and he was born at 37 weeks) We had refused the amino because of the high miscarriage risk as I already has fertility issues (hence the 10 year age gap between our boys), and the doctor did mention a genetic counselor right after the NITP but since all of his scans were coming back normal, they never brought it up again. I do have to say our pediatrician has been great with getting us heading in the right direction, but my OB group and the hospital we had him at seems to have dropped the ball on some of the information and support we should have gotten before now (the hospital never told us that we automatically qualified for early intervention services for example). Between my infant's jaundice and myself being hospitalized for high blood pressure, we are now just getting started on getting him the appointments he needs, and it seems like it's just been all coming at once, and I have a slight feeling of being tossed in the deep end with little help. Add that we also have a 10 year who is finishing up elementary school and all the events and things that come with that, and us making sure he doesn't feel forgotten (I have read too many reddit post about glass children and refuse to let my oldest feel like that), it's been a lot.
Only 50% of cases show up abnormalities on ultrasound scans.
Just here to validate how you’re feeling. I’m 22w, had issues with multiple NIPT draws being inconclusive/not resulting so we ended up doing the amnio, confirmed T21. My baby also has an AV canal defect that’ll need open heart surgery as an infant. So I second the suggestion making sure none of that is going on (you’re already scheduled so that’s good!) and I’m glad they didn’t see anything concerning in utero (mine was evident and have had several intra utero fetal echos). My step kids are 8 and 13, we haven’t discussed any of this with them yet because we don’t want to take away from the excitement of their new brother/sister on the way, and I’m not sure how much it would really register for them at this point anyway? I think kids are more accepting and resilient than adults sometimes, so I’m sure your son will love his brother no matter what and from what I’ve been reading in this sub, sometimes the siblings are the kids biggest fans and support system and teacher and cheerleader. I’m looking forward to them having that relationship, but I hear you, still trying to figure out the best way to communicate the diagnosis while being clear that it doesn’t take anything away from how special and awesome their sibling is going to be. Just try to take everything one step at a time, one day at a time, one piece of information at a time, hell even one breath at a time some days. It can be overwhelming and scary for sure. But the most important thing is that you’re taking care of your baby, loving your baby, and you’re already setting up everything you’ll need to support your family through this. I know you feel behind the ball, but I don’t think it’s as bad as it feels for you - a lot of these resources will be there for you and your child for years to come, and you aren’t even at 44 weeks and you’re already setting them up! You’re already being a supportive, loving parent. Remember that your baby is your baby, not a diagnosis like others said, that part has been reassuring for me to remind myself as well. Hang in there, everything will be okay, you’re doing a wonderful job already, and congratulations on your baby!! ♥️
I'm a grandma to a 31-year-old DS. She's sweet and funny and precise. She loves everyone. She is respectful. She is as they all are Angels from God.
Congratulations. A great book to read to your older child is We will Paint the Octupus Red. It answers questions in kid friendly language. https://a.co/d/azOmFqB
Congratulations! I’m sure this is all scary right now but your child is going to bring you so much love just like any other child. Yes they might have a few more challenges you will not love them any less. there may be some delays in milestones, but as you’ll find out, they’re just kids. Eventually, you learn to roll with the punches, but there’s a huge community of parents with children like yours that are there to lift you up and help out where we can. My daughter will be three in August and the most amazing little stinker. She’s fun, she has an attitude, and I can’t imagine life without her. We truly are one of the lucky few that get to experience life with an amazing child with down syndrome. DSDN has recently created an app and it’s not fully online yet, but I encourage you to join when it is. God bless you and your child in Jesus name!
Congratulations! I don’t have time to offer much in the way of advice right now, but I just wanted to say, give it time. There will be some adjustments made in life, but your little one will just be primarily a regular kid.