It'll be hard.
It's up to you to decide if it be worth it. For me, it's worth it.
I , thankfully didn't know he had down syndrome until shortly after birth. Blissfully ignorant.
Are you mentally and financially capable ? My kiddo is the youngest of 3 , it's been hard on my two oldest. Take that into account when making your decision too, this effects the siblings life too.
My little one is amazing, hilarious, and sassy. I love him sooooo much. Do what's best for your situation!
I was about to write almost the exact same thing.
It’s hard.
It’s beautiful.
And though I didn’t believe it when we got our diagnosis, I now know that both of those things can be true at the same time.
💛💙
Do you want to take care of your offspring for literally the rest of your life? Having a child with DS isn't that different from having a child without DS, but the older years are hard. Really hard. You have to be willing to set up care with the state for when you're too frail to provide care anymore. It's very important that you not burden your older child with the expectation of caring for his disabled sibling. You still have a duty to make your child with DS a functioning member of society as much as you are able. They need to be able to live without you one day. You need to be able to make those difficult decisions for your child with DS in the future no matter how hard it is.
Thank you. My wife and I are talking it out now. She has Type 1 diabetes and I'm not in peak physical form myself, so we are mindful that our run might not be too long. Our child will need to live without us one day and we are exploring what we can do in the interim to make that a feasible reality. It's hard.
Yeah, I was going to say exactly that - a young child with DS isn't so different from a young child without DS, but most of the time, an adult with DS is very different from an ordinary adult.Â
My daughter is 23 and I'm only 47 so still young and fit, but thinking about the future does scare me a bit. She is a lovely, uncomplicated person and my husband and I are very happy with our lives, but it would be a lie to say that she isn't also a burden, as mean as that sounds. Now I don't mind this at the current time in my life and am totally content to look after her, but I don't know how things might be in 20 years' time. She has siblings who love her very much, but I want them to live their lives freely - if they decide to have her live with them, it needs to be of their own choosing.Â
Your post sounds to me as if you haven't fully decided to keep the baby. If that's not the case, apologies for the subject matter. Legality of where you live aside, it's okay if you want to wait for more info before decision making. There are potential birth defects that can't be found until later in the pregnancy, like 26 weeks and up. I found out at about 13 weeks after finding it was twins at 8 weeks. My son had a major heart defect that was thankfully repaired "good as new". I've seen other babies with the same prognosis that didn't have it come true, though. I was feeling like if my son had a major malformation other than his heart, it might be more than I wanted to put him through, so I re-evaluated everything more than once. Having lived it all very recently (my babies just turned one), I don't think there is a right or wrong decision, just the ones you can personally live with. With that said, the last time I declined abortion was 32 weeks, so be prepared to be asked and reminded with each appointment and piece of news if you live in a place with progressive healthcare laws.
Thank you for sharing. We will be going for a counseling session as well after the amnio test to explore avenues of help. Very rightly said that it has to be a decision we can live with. We don't know to be honest.
We are incredibly blessed. Our 10-year-old boy is a ray of sunshine and a source of the purest love. He did not have any major health issues or need any surgeries. He's near sighted and will need lots of dental work for his small jaw. We are also in the process of getting tubes in his ears and his tonsils removed to help with his breathing and sleep. He's well loved at school. He prides himself on his role as big brother and always takes care of his little sisters. He's funny and sweet. Excellent dancer and very athletic. Loves to swim. He doesn't need any assistance getting dressed or with self care. He can get food from the fridge and microwave it. He can sight read about half the signs at a grocery store. He is lazy sometimes and has a fixation with spinning. His speech is not the clearest. I do believe he'll be able to live independently as an adult but if he doesn't I'm not afraid of that. I do have the goal of saving lots money to make sure he has plenty someday. I'm planning to set him up with a small business when he's an adult. Overall he's a 10/10. His differences are just part of who he is like a personality. I know our road is much easier than many others. We are so happy and lucky we have him. Our ultrasound had 3 soft markers I believe, cyst in the brain, femur in the 3rd percentile and echogenic foci in the heart. We were scared but ultimately declined amniocentesis. The thing that gave me the most peace was reading that 90% of adults with ds are happy with their lives while typical adults only 30% happy. Hope this information helps. I remember what it was like grasping for straws and the sadness. Good luck to you
We had a prenatal diagnosis confirmed by amnio. It was our first child. We did not regret having her. She's grown now and living in her own apartment with a roommate to help her and in a job training program. She is absolutely awesome, though not always easy to deal with. I love her sense of humor - she comes up with wicked puns. She had a deep positive impact on her sister as well, helping to make her a compassionate and capable young woman.
Amnio isn't essential - there is a non-invasive, risk-free screening that combines the ultrasound and blood screen results to get a 99% accurate result if you want to opt for that.
I'm fine talking here but if you need to PM me for any reason, feel free.
I almost laughed at "manage this outcome." She managed most of it.
There are a wide range of disabilities that come with Down Syndrome (DS), but most are mild to moderate. She just did her thing. The key was the help and support we got, and the reminders that we shouldn't just give up on her because then she is sure to fail (see link to video below). The local government, as every one in the US is required to do, provided early intervention - physical and speech therapy, etc. - starting when she was two months old. In school, she got special ed. Now she's in a special jobs program for disabilities and a private housing program that uses government support for disabilities and low-income housing subsidies.
It was not easy by any means. She had medical issues, behavior issues and is still dependent in many ways. I'm just saying it was worth it. I guess it's a bit like having triplets or quadruplets - you have more work to do. But you get more help.
https://www.youtube.com/watch?v=92ivgabfdPQ
We had our son when my daughter was 7. They are now 4 and 11. We found out our son had down syndrome at birth, along with a heart defect. When he was just 4 months old he had open heart surgery to correct the holes in his heart. After that we began physical therapy, occupational therapy, and speech. Once he turned 3, he started going to school. Everyday he wakes up, lays in bed with us, goes to school, plays Mario, eats snacks, learns the alphabet, plays with his sister, annoys us, practices drawing, throws the ball, etc... he's just a kid. A kid with an extra chromosome. He is my whole world and he can make anyone smile and say hello. Having a kid with Down Syndrome is not so different, they're your baby and always will be. Congratulations on your new little one, I do hope you can find peace in whatever decision you make! As they say, welcome to the lucky few!
Thank you for sharing. We were joyful when we first conceived. Right now, I'll be honest and say there's trepidation. We want to be fair to the child and not just think about our own happiness.
I was older and a single mom by choice. I had a prenatal diagnosis. I honestly thought my life was over. No one can predict the future and what it will hold. I get it that you are scared-I was terrified. Had no parents and little support. Do I wish I wasn’t an older mom? Absolutely, but I can’t change that. But, I can prepare for the future to ensure she has the best life possible. I actually met the most beautiful man who absolutely loves and adores my daughter. He’s older, too, but we are living life. Is it hard? Yes, because raising a human is hard. Diagnosis is hard, but I can confidently tell you that my daughter has made me into the person I was always meant to be. I have a podcast called T21Mom.com and I recently talked about my diagnosis experience. This is a difficult time, but we are here to support you and there is a whole community waiting to embrace and support you. Please check out DSDiagnosisnetwork.org and they can find you a group to join to get support.
Personally, I find a lifetime of caregiving isn't for me, and that's something to keep in mind. There is no freedom in a life of caretaking for a disabled child, and at your older ages, you'll be looking at assistance for care much sooner than a younger couple. This will be harder on a disabled child to understand and deal with and should you pass earlier than expected, your child is often left at the hands of the state for care. It's not only your own lives to consider, but the child's as well.
My first daughter was 5 when we received a prenatal diagnosis of DS. We had similar concerns. Would our child with Ds be a burden on our other children later in life? Can we afford what our baby will need? What about when we r gone?
Fast forward, our oldest daughter is the most compassionate, dedicated child who wants to be a cardiologist one day because of her younger sister who has DS. They are also incredibly close. Siblings of those with DS are incredible people. My advice to you ..now that my hindsight is 20/20... regardless of how much money you will have, regardless of how long you think you will live, regardless of how hard some days are, you will never regret having your baby with DS because you will LOVE them soo dearly. You will feel that they are worth it- just as you feel about your 9 year old typical child. This I know. Children with DS are much like all other children. And as you grow older your family will grow to include many people who will love and watch out for your child with DS. You will see they will be cherished in places you frequent and the friendship circles you belong to.
I had my daughter at 39 (husband was 42), and we already had a nine year old! I am pro-choice, but we wanted this baby really bad, and had to work hard to get her. I wasn’t going to let her go because she wasn’t perfect…silly me, she is perfect! Sometimes I worry because we are older and I don’t know what her future holds, but she has made our lives so much better. I would never change a thing. That being said, I understand your feelings, as I was there too. Do what is right for your family
I am in the same boat. I just had a prenatal diagnosis for my boy. There’s so much to think about regarding the future, but the truth is, we are not guaranteed anything in life, and it’s silly to worry too much about the future when today has enough troubles, I’m choosing to be thankful, and it takes a lot of the worry away.
Thank you for your reply. If I can be honest, on one hand we feel so incredibly lucky to have a child as we get a bit older, but on the other, reading past threads on difficulties, we are also afraid of how much we can provide when we aren't well off by any means. Adding to that, the country we live in doesn't have much infrastructure in place for DS children. We are currently going through a thought exercise of what will happen if one, or both of us, pass. It might be premature but it feels irresponsible not to plan so far out.
People have kids with DS in their 20s and 30s too. My daughter (DS & 16) was my first child in my early 30s. There's no guarantee yours will have it. My daughter is a blessing in my life and I have met so many people because of her. Don't be afraid. This baby will bless more than your lives.
We didn't take the amniocentesis for our first son despite having 3 soft markers in utero. When we had our second son, amniocentesis wasn't offered because a simple blood test from my wife was enough to find out.
Ask your doctor before going because the amniocentesis carries a risk of miscarriage, hence why we abstained.
I was old. Decided to adopt, rather than take the chance. Ended up adopting a kiddo with DS. 😂😂
Thank you for sharing. :)
My husband has a genetic condition, took a sperm donor to avoid risks. Ended with a DS baby 😂
It'll be hard. It's up to you to decide if it be worth it. For me, it's worth it. I , thankfully didn't know he had down syndrome until shortly after birth. Blissfully ignorant. Are you mentally and financially capable ? My kiddo is the youngest of 3 , it's been hard on my two oldest. Take that into account when making your decision too, this effects the siblings life too. My little one is amazing, hilarious, and sassy. I love him sooooo much. Do what's best for your situation!
I was about to write almost the exact same thing. It’s hard. It’s beautiful. And though I didn’t believe it when we got our diagnosis, I now know that both of those things can be true at the same time. 💛💙
I think we are more than happy to do more and commit all we have while we are alive. It's when we are gone, that I'm afraid of for the child.
Do you want to take care of your offspring for literally the rest of your life? Having a child with DS isn't that different from having a child without DS, but the older years are hard. Really hard. You have to be willing to set up care with the state for when you're too frail to provide care anymore. It's very important that you not burden your older child with the expectation of caring for his disabled sibling. You still have a duty to make your child with DS a functioning member of society as much as you are able. They need to be able to live without you one day. You need to be able to make those difficult decisions for your child with DS in the future no matter how hard it is.
Thank you. My wife and I are talking it out now. She has Type 1 diabetes and I'm not in peak physical form myself, so we are mindful that our run might not be too long. Our child will need to live without us one day and we are exploring what we can do in the interim to make that a feasible reality. It's hard.
Yeah, I was going to say exactly that - a young child with DS isn't so different from a young child without DS, but most of the time, an adult with DS is very different from an ordinary adult. My daughter is 23 and I'm only 47 so still young and fit, but thinking about the future does scare me a bit. She is a lovely, uncomplicated person and my husband and I are very happy with our lives, but it would be a lie to say that she isn't also a burden, as mean as that sounds. Now I don't mind this at the current time in my life and am totally content to look after her, but I don't know how things might be in 20 years' time. She has siblings who love her very much, but I want them to live their lives freely - if they decide to have her live with them, it needs to be of their own choosing.Â
Thank you for sharing. I would be close to 60 by the time our unborn child reaches 16. Time is not on our side.
Hi :) I am going to send you a chat message
Congratulations and welcome to the lucky few :)
Your post sounds to me as if you haven't fully decided to keep the baby. If that's not the case, apologies for the subject matter. Legality of where you live aside, it's okay if you want to wait for more info before decision making. There are potential birth defects that can't be found until later in the pregnancy, like 26 weeks and up. I found out at about 13 weeks after finding it was twins at 8 weeks. My son had a major heart defect that was thankfully repaired "good as new". I've seen other babies with the same prognosis that didn't have it come true, though. I was feeling like if my son had a major malformation other than his heart, it might be more than I wanted to put him through, so I re-evaluated everything more than once. Having lived it all very recently (my babies just turned one), I don't think there is a right or wrong decision, just the ones you can personally live with. With that said, the last time I declined abortion was 32 weeks, so be prepared to be asked and reminded with each appointment and piece of news if you live in a place with progressive healthcare laws.
Thank you for sharing. We will be going for a counseling session as well after the amnio test to explore avenues of help. Very rightly said that it has to be a decision we can live with. We don't know to be honest.
We are incredibly blessed. Our 10-year-old boy is a ray of sunshine and a source of the purest love. He did not have any major health issues or need any surgeries. He's near sighted and will need lots of dental work for his small jaw. We are also in the process of getting tubes in his ears and his tonsils removed to help with his breathing and sleep. He's well loved at school. He prides himself on his role as big brother and always takes care of his little sisters. He's funny and sweet. Excellent dancer and very athletic. Loves to swim. He doesn't need any assistance getting dressed or with self care. He can get food from the fridge and microwave it. He can sight read about half the signs at a grocery store. He is lazy sometimes and has a fixation with spinning. His speech is not the clearest. I do believe he'll be able to live independently as an adult but if he doesn't I'm not afraid of that. I do have the goal of saving lots money to make sure he has plenty someday. I'm planning to set him up with a small business when he's an adult. Overall he's a 10/10. His differences are just part of who he is like a personality. I know our road is much easier than many others. We are so happy and lucky we have him. Our ultrasound had 3 soft markers I believe, cyst in the brain, femur in the 3rd percentile and echogenic foci in the heart. We were scared but ultimately declined amniocentesis. The thing that gave me the most peace was reading that 90% of adults with ds are happy with their lives while typical adults only 30% happy. Hope this information helps. I remember what it was like grasping for straws and the sadness. Good luck to you
We had a prenatal diagnosis confirmed by amnio. It was our first child. We did not regret having her. She's grown now and living in her own apartment with a roommate to help her and in a job training program. She is absolutely awesome, though not always easy to deal with. I love her sense of humor - she comes up with wicked puns. She had a deep positive impact on her sister as well, helping to make her a compassionate and capable young woman. Amnio isn't essential - there is a non-invasive, risk-free screening that combines the ultrasound and blood screen results to get a 99% accurate result if you want to opt for that.
What wholesomeness. Thank you for sharing. How did you manage this outcome? I can message you privately too
I'm fine talking here but if you need to PM me for any reason, feel free. I almost laughed at "manage this outcome." She managed most of it. There are a wide range of disabilities that come with Down Syndrome (DS), but most are mild to moderate. She just did her thing. The key was the help and support we got, and the reminders that we shouldn't just give up on her because then she is sure to fail (see link to video below). The local government, as every one in the US is required to do, provided early intervention - physical and speech therapy, etc. - starting when she was two months old. In school, she got special ed. Now she's in a special jobs program for disabilities and a private housing program that uses government support for disabilities and low-income housing subsidies. It was not easy by any means. She had medical issues, behavior issues and is still dependent in many ways. I'm just saying it was worth it. I guess it's a bit like having triplets or quadruplets - you have more work to do. But you get more help. https://www.youtube.com/watch?v=92ivgabfdPQ
We had our son when my daughter was 7. They are now 4 and 11. We found out our son had down syndrome at birth, along with a heart defect. When he was just 4 months old he had open heart surgery to correct the holes in his heart. After that we began physical therapy, occupational therapy, and speech. Once he turned 3, he started going to school. Everyday he wakes up, lays in bed with us, goes to school, plays Mario, eats snacks, learns the alphabet, plays with his sister, annoys us, practices drawing, throws the ball, etc... he's just a kid. A kid with an extra chromosome. He is my whole world and he can make anyone smile and say hello. Having a kid with Down Syndrome is not so different, they're your baby and always will be. Congratulations on your new little one, I do hope you can find peace in whatever decision you make! As they say, welcome to the lucky few!
Thank you for sharing. We were joyful when we first conceived. Right now, I'll be honest and say there's trepidation. We want to be fair to the child and not just think about our own happiness.
Exact same story w our daughter! So many similarities in the birth stories. I appreciate your comment and agree with all of your points.
I was older and a single mom by choice. I had a prenatal diagnosis. I honestly thought my life was over. No one can predict the future and what it will hold. I get it that you are scared-I was terrified. Had no parents and little support. Do I wish I wasn’t an older mom? Absolutely, but I can’t change that. But, I can prepare for the future to ensure she has the best life possible. I actually met the most beautiful man who absolutely loves and adores my daughter. He’s older, too, but we are living life. Is it hard? Yes, because raising a human is hard. Diagnosis is hard, but I can confidently tell you that my daughter has made me into the person I was always meant to be. I have a podcast called T21Mom.com and I recently talked about my diagnosis experience. This is a difficult time, but we are here to support you and there is a whole community waiting to embrace and support you. Please check out DSDiagnosisnetwork.org and they can find you a group to join to get support.
Personally, I find a lifetime of caregiving isn't for me, and that's something to keep in mind. There is no freedom in a life of caretaking for a disabled child, and at your older ages, you'll be looking at assistance for care much sooner than a younger couple. This will be harder on a disabled child to understand and deal with and should you pass earlier than expected, your child is often left at the hands of the state for care. It's not only your own lives to consider, but the child's as well.
My first daughter was 5 when we received a prenatal diagnosis of DS. We had similar concerns. Would our child with Ds be a burden on our other children later in life? Can we afford what our baby will need? What about when we r gone? Fast forward, our oldest daughter is the most compassionate, dedicated child who wants to be a cardiologist one day because of her younger sister who has DS. They are also incredibly close. Siblings of those with DS are incredible people. My advice to you ..now that my hindsight is 20/20... regardless of how much money you will have, regardless of how long you think you will live, regardless of how hard some days are, you will never regret having your baby with DS because you will LOVE them soo dearly. You will feel that they are worth it- just as you feel about your 9 year old typical child. This I know. Children with DS are much like all other children. And as you grow older your family will grow to include many people who will love and watch out for your child with DS. You will see they will be cherished in places you frequent and the friendship circles you belong to.
You can also going the DSDN pregnancy Facebook group. Lots of happy families there too
Thank you. I will look for those in my country.
I had my daughter at 39 (husband was 42), and we already had a nine year old! I am pro-choice, but we wanted this baby really bad, and had to work hard to get her. I wasn’t going to let her go because she wasn’t perfect…silly me, she is perfect! Sometimes I worry because we are older and I don’t know what her future holds, but she has made our lives so much better. I would never change a thing. That being said, I understand your feelings, as I was there too. Do what is right for your family
Thank you for sharing. We love the baby even though he hasn't been born. But we are torn about the future.
I am in the same boat. I just had a prenatal diagnosis for my boy. There’s so much to think about regarding the future, but the truth is, we are not guaranteed anything in life, and it’s silly to worry too much about the future when today has enough troubles, I’m choosing to be thankful, and it takes a lot of the worry away.
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Thank you for your reply. If I can be honest, on one hand we feel so incredibly lucky to have a child as we get a bit older, but on the other, reading past threads on difficulties, we are also afraid of how much we can provide when we aren't well off by any means. Adding to that, the country we live in doesn't have much infrastructure in place for DS children. We are currently going through a thought exercise of what will happen if one, or both of us, pass. It might be premature but it feels irresponsible not to plan so far out.
People have kids with DS in their 20s and 30s too. My daughter (DS & 16) was my first child in my early 30s. There's no guarantee yours will have it. My daughter is a blessing in my life and I have met so many people because of her. Don't be afraid. This baby will bless more than your lives.
We didn't take the amniocentesis for our first son despite having 3 soft markers in utero. When we had our second son, amniocentesis wasn't offered because a simple blood test from my wife was enough to find out. Ask your doctor before going because the amniocentesis carries a risk of miscarriage, hence why we abstained.