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Forum -> Children's Health
Just gave birth to baby with Downs
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flowerpower




 
 
    
 

Post Sun, Nov 18 2018, 8:40 am
Thanks for the update❤️
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amother
Powderblue


 

Post Sun, Nov 18 2018, 10:01 am
B”H that you are doing well!! What a nice update!
I have to say that even through your first post when you were in a state of shock, you sounded like someone with inner strength.
It also sounded like as hard as it was you had your dh on your side. You have no idea how much better life is when you are “in it” together. BH for that!
May you have continued strength and joy in raising your new baby and of course your other children too.
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amother
Mint


 

Post Mon, Nov 19 2018, 3:30 am
Thank you for update have been thinking a lot about you and how you are doing.
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amother
Jade


 

Post Tue, Dec 04 2018, 11:16 am
OP, maybe you can be of help.

My sister gave birth today. The baby has downs syndrome. I myself am trying to process the news.

I want to be here for my sister. What is the best way for me to react to her about this? How can I make her feel better?? What about my parents?? What is the best thing to say or do for them??

My whole family is shocked. I haven't spoken yet to my sister and parents. Any ideas would be helpful.
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amother
Blush


 

Post Tue, Dec 04 2018, 11:45 am
Not op but another another of a sn child.
Call your sister and wish her mazal tov! Let her know you are looking forward to meeting your new adorable niece and if you have children, let her know your kids are so excited and over the moon to have another cousin to play with! Buy her a baby gift. Offer to help with anything she might need like dinners or babysitting. Basically anything you would do for her if her child were typical.
It's * really really* important to show her that her child will be loved and accepted unconditionally from her family. I cant stress that enough. please don't sound sad or nervous or uncomfortable it will only make her feel worse. Call your parents too and let then know that. Not calling to say mazal tov is so hurtful because it's the opposite of support, the opposite of embracing each new life exactly as Hashem wanted. Your niece is perfect the way she and when you internalize this it will be helpful for everyone.
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amother
Amethyst


 

Post Tue, Dec 04 2018, 11:51 am
When my good friend had a baby with DS, she had several well-meaning visitors who were also parents of kids with DS tell her how wonderful it is and what a bracha it is etc. etc. She said the person she appreciated most was the one who told her, "Sara, I'm sorry." This visitor was also a very loving mother of a beautiful child with DS, but she didn't pretend this was good news. And my friend appreciated that. Your sister might too, along with a big mazel tov and everything else.
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amother
Seafoam


 

Post Tue, Dec 04 2018, 12:27 pm
Hi Amother Jade, it’s OP.

First of all, Mazel Tov on your new niece! And, wow, it must be such a big shock for your family to process right now.

I’m by no means an expert on this, and other people here have provided so much good advice. I agree that it was really nice for me to hear how happy and excited people were for our new baby. But it was also extremely comforting when the people closest to me were able to just listen and be there for me as I was processing the news.

I don’t think I heard “I’m so sorry!” from anyone, and honestly, I think it would not have been good for me to hear. But everyone is different. I appreciated it when people said things like “Wow” (as I did to you above) because it acknowledged the intensity of the situation and all the mixed emotions, without labeling it as good or bad. (I hope that was the right response for you but if not, I’m sorry!)

It was also comforting for me to hear certain haskafic points like, “You must be such a special person because Hashem picked you for this job” but again it depends on who your sister is and your relationship to her.

There were certain reactions from people that were well-meaning and loving but I couldn’t appreciate them until later because the pain was too raw at the beginning. But it is very hard to know exactly what a person needs to hear at each time.

For me the first few days were crazy intense, as you can read about here, and then got a lot better after I had “cried it out”. (I think I was teary on and off for a few weeks, but it was also mixed with lots of feelings of joy, too, and those good ol’ postpartum hormones). Yes, the beginning was really just so painful. But then it passed. IY”H your sister will have an easy time of it, too.

Right now, just shower her with love and support, and baby presents, so she knows how loved and celebrated the new baby is.

One practical piece of advice: DS babies tend to grow at a slower rate than typical, so if you buy an outfit, check with your sister which size to get.

Something else that makes me really happy is seeing my friends and family hold my baby, bond with her and fall in love with her. It reminds me how special she truly is.

If your sister wants to be in touch with me I’d be more than happy to speak to her. Maybe our kids can be friends!

Also there’s a Facebook group called Jewish Parents and Grandparents of Children with Down Syndrome that is very supportive and positive.

I am thinking of your sister and your whole family. May your niece be happy and healthy and your sister should have an easy recovery from birth, physically and emotionally. And may you all feel Hashem taking care of you every step of the way. Hug
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downsyndrome




 
 
    
 

Post Tue, Dec 04 2018, 1:11 pm
Hi Y'all!
I haven't been on imamother in a long time and just logged on. What hashgacha that I see this thread.
Mazel Tov 'old' OP and Mazel Tov 'new' ima who posted several posts up. Mazel Tov to all sisters, friends, neighbors and acquaintances of families that are zocheh to have and raise a child with Down syndrome. It is a most thrilling journey!

My son, Moishey, was born with Down syndrome. He is now 29 years old. I love him immensely.

Feel free to contact me.
Yes, I am the one who publishes Down Syndrome Amongst Us magazine. Another to be published on January 2nd iy'H.
Best,
downsyndrome
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PinkFridge




 
 
    
 

Post Tue, Dec 04 2018, 2:21 pm
OP, did I see this thread? Mazel tov, and wishing you and everyone much nachas from your children!
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amother
Seafoam


 

Post Tue, Dec 04 2018, 3:39 pm
PinkFridge wrote:
OP, did I see this thread? Mazel tov, and wishing you and everyone much nachas from your children!


Amen, thank you so much! And you too Smile
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CPenzias




 
 
    
 

Post Tue, Dec 04 2018, 5:20 pm
I have a brother in law who is 24 and has down syndrome.
The things he can do.... for a long time he couldn't read, now he reads in English and Hebrew. He is so smart. When he can't do something he finds exactly who can. He's just amazing. I love him. I can be in a horrible mood and he always knows just what to say.
It's tough, I'm sure but iy"h your baby girl should make you feel as happy and loving as my brother in law has made us feel. He radiates love and caring for everyone. I can't imagine my life without him.
Your baby is going to bring you nachas, you'll see. My other brother in law said it well. "He'll be able to do everything, just in his own time." mazel tov and best of luck. We're all here for you!
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amother
Turquoise


 

Post Tue, Dec 04 2018, 6:19 pm
amother wrote:
please reach out to people who have been there, done that in real life. They can be there for you.
Aviva Werner has a blog. She has a child with down syndrome and actually is fostering another child with Down syndrome. She talks about it a lot, you might want to read up on it to give you some chizuk.

I know someone who had a child with down syndrome and she said it was really tough at the beginning, she never would have chosen it but now that she has him he has brought so much joy in to her life.

All your feelings are completely normal, let yourself cry, let yourself process. It's a different reality then you expected. Hopefully the hospital has some resources for you as well.


FYI- It's Avivah with an "h" at the end...
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Surrendered




 
 
    
 

Post Tue, Dec 04 2018, 8:38 pm
Hi all, My friend just created a beautiful package, full of chizuk for mothers Who give birth to Down syndrome babies.
If you know a new special mother who would appreciate this beautiful package, please PM me so we can mail one out to her.
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amother
Wheat


 

Post Tue, Dec 04 2018, 8:52 pm
Surrendered wrote:
Hi all, My friend just created a beautiful package, full of chizuk for mothers Who give birth to Down syndrome babies.
If you know a new special mother who would appreciate this beautiful package, please PM me so we can mail one out to her.

Wow! thats amazing! is this only for moms of babies with DS or would it be sent to moms of babies with other syndromes/health issues?
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WastingTime




 
 
    
 

Post Wed, Dec 05 2018, 6:34 am
Sorry if this question is totally out of place/insensitive. Those with down syndrome children, was there any indication of possible issues on ultrasound (esp. 20 week scan if you did one)?
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Jeanette




 
 
    
 

Post Wed, Dec 05 2018, 6:46 am
WastingTime wrote:
Sorry if this question is totally out of place/insensitive. Those with down syndrome children, was there any indication of possible issues on ultrasound (esp. 20 week scan if you did one)?


It is insensitive, kind of, and let me explain why.

When you're first processing the news (whether its DS or any other disability), the last thing you need is a question that sounds intrusive or blaming your judgment or decision making. If I did or didn't do an ultrasound, or did or didn't know before the birth, what difference does it make now? I know you didn't mean the question in that sense but exploring those questions is just not where a new parent is at the moment.

An exception is if you were told certain news on an ultrasound and are trying to determine what this news means for your baby or your pregnancy. In that case by all means reach out to Down syndrome groups for advice and support. You will be getting support from veteran parents, not a fresh new parent struggling to digest the news herself. There are specific groups for DS pregnancy, and yes there are people who were told something based on an ultrasound that turned out not to be true.
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amother
Powderblue


 

Post Wed, Dec 05 2018, 7:00 am
Jeanette wrote:
It is insensitive, kind of, and let me explain why.

When you're first processing the news (whether its DS or any other disability), the last thing you need is a question that sounds intrusive or blaming your judgment or decision making. If I did or didn't do an ultrasound, or did or didn't know before the birth, what difference does it make now? I know you didn't mean the question in that sense but exploring those questions is just not where a new parent is at the moment.

An exception is if you were told certain news on an ultrasound and are trying to determine what this news means for your baby or your pregnancy. In that case by all means reach out to Down syndrome groups for advice and support. You will be getting support from veteran parents, not a fresh new parent struggling to digest the news herself. There are specific groups for DS pregnancy, and yes there are people who were told something based on an ultrasound that turned out not to be true.


Huh?
She just wanted to know if people knew it was a possibility before birth?
You can choose to answer or not answer.
No one was asking you how accurate you believe ultrasounds are.
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Jeanette




 
 
    
 

Post Wed, Dec 05 2018, 7:10 am
amother wrote:
Huh?
She just wanted to know if people knew it was a possibility before birth?
You can choose to answer or not answer.
No one was asking you how accurate your believe ultrasounds are.


It's always a good idea to listen to people who have been through it when they tell you that something sounds insensitive.

Of course, you are free to ignore this advice and ask anyway if you feel it's very important for you to know.
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WastingTime




 
 
    
 

Post Wed, Dec 05 2018, 7:35 am
Jeanette wrote:
It is insensitive, kind of, and let me explain why.

When you're first processing the news (whether its DS or any other disability), the last thing you need is a question that sounds intrusive or blaming your judgment or decision making. If I did or didn't do an ultrasound, or did or didn't know before the birth, what difference does it make now? I know you didn't mean the question in that sense but exploring those questions is just not where a new parent is at the moment.

An exception is if you were told certain news on an ultrasound and are trying to determine what this news means for your baby or your pregnancy. In that case by all means reach out to Down syndrome groups for advice and support. You will be getting support from veteran parents, not a fresh new parent struggling to digest the news herself. There are specific groups for DS pregnancy, and yes there are people who were told something based on an ultrasound that turned out not to be true.


I
My question was coming from me being anxious abt my own fetus, for no reason at all, but just the anxiety yetzer harah. Testing or not would be irrelevant as I would assume the vast majority of ppl on this site wouldn't do anything with the knowledge. But if there weren't ultrasounds then my question is simply irrelevant. Question was really if they usually see something that MAY indicate a problem, I.e. my friend's baby had heart issues that can be associated with DS so they knew there was a chance.
So I'm wondering if any mothers were told everything looks fine but the baby was still DS. (Yes I know there can Gd forbid be 100s of issues that no ultrasound can show)

Signed a not young mother who hasn't had a baby in many yrs and is being nervous for no good reason
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Jeanette




 
 
    
 

Post Wed, Dec 05 2018, 7:49 am
WastingTime wrote:
I
My question was coming from me being anxious abt my own fetus, for no reason at all, but just the anxiety yetzer harah. Testing or not would be irrelevant as I would assume the vast majority of ppl on this site wouldn't do anything with the knowledge. But if there weren't ultrasounds then my question is simply irrelevant. Question was really if they usually see something that MAY indicate a problem, I.e. my friend's baby had heart issues that can be associated with DS so they knew there was a chance.
So I'm wondering if any mothers were told everything looks fine but the baby was still DS. (Yes I know there can Gd forbid be 100s of issues that no ultrasound can show)

Signed a not young mother who hasn't had a baby in many yrs and is being nervous for no good reason


I understand where your question is coming from. As I said there are cases where ppl were told bad things on an ultrasound that turned out not to be true. I personally don't know of cases where people were told everything was fine and turned out not to be fine, but probably such cases exist.
Personally my philosophy is "dont borrow trouble."
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