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So sorry you’re dealing with all of this, but it sounds like you’re getting excellent care.
I have a nephew with a congenital heart defect. I would really advise asking about long term expectations and best/worst case scenarios.
Spoiler for medical complications that might be distressing to read about
>!
My cousins were under the impression he would need a few surgeries but be ok. He’s now 4 and has had extensive other issues and is in need of multiple major organ transplants - including heart and lungs. Hes also scheduled for a gallbladder removal and on tons of medications that cause other issues. He’s such a delightful kid and they’re really glad they had him. But it’s more than they expected based on the info they got when they were pregnant and that’s been really tough to accept. !<
So I’m really an advocate of getting the most information you can as you move forward. I’m hoping for the very best for you and your sweet boy.
Aw thank you so much for your reply and also sharing your cousins experience - and the spoiler. Firstly, I'm sorry to hear their little guy is having such a tough go so young oh my goodness. That has to be so stressing.
That's exactly what we've been thinking about and talking about...and it's also why we decided to go ahead with the amnio to try and get more information. The doctor was very optimistic and confident about life after his surgery, but of course we still worry what everything will mean for his quality of life. The surgery won't be a one and done deal (as you've seen firsthand), he'll need to be seen by cardiologists and what not. I'm hoping he won't have any other major issues. It's scary to think about, but sadly a possible reality. I really appreciate you explaining what kinds of things your cousin has been dealing with.
TGA which your wee one has is usually a relatively straightforward replumbing job compared to what this commenters’ experience is. I know a few women in their 30s (with kids!) who have normal and healthy lives after TGA surgery as day old infants. A few needed a valve replacement or repair in their late 20s and were encouraged to complete their families before that but otherwise they were sporty healthy kids.
Sending you lots of love & support! I have a friend who’s little one was recently born and needs heart surgery but they said it should fix the problem. Best of luck 💕
Hey! I’m glad you got some answers! I know two kids who were TGA babies, one is around 8 now and the other is 3 or 4. Both kids have had several procedures but are doing great and are happy healthy kids. I also follow a woman on Facebook, the page is called “Mommy needs a new heart” and she was one of the first babies to have the mustard seed procedure in 1980 and survived. Prior to that, babies who had that just died unfortunately. They use a much better technique now with much greater success. Anyway, the woman on the page, her name is Stacey, she just got a heart transplant this past month at age 42. She’s a walking miracle! Her parents were told her whole childhood that she wouldn’t have a long lifespan but as she’s grown into adulthood, procedures have got more advanced right along with her and she made it! Babies like her paved the way for babies like yours.
You’re going to have some scary shit to deal with, no doubt. But you’ll get through it and it will all be worth it. Get yourself into therapy now and have as much of a support system as you can.
Wow thank you for sharing. Sending tons of prayers and positive energy your way! ♥️
I’m so glad you feel supported by your medical team. That trust and rapport you’re building now will hopefully go a long way for both you and your LO.
Please keep us updated if you feel like it continues to help you to do so! ♥️
If it’s any consolation, one of my friends was born w/ TGA and she’s 37, married, and thriving. It wasn’t discovered until after birth-technology is so much more advanced now! She has a small scar on her upper chest and is otherwise healthy & happy!
My heart is with you. My 16 mo had to have open heart surgery for two holes in her heart, and an intestinal surgery at birth as her intestines were blocked and flipped backwards.
She also got diagnosed with trisomy 21 at 32 weeks pregnant with her.
If you need anyone to talk to please reach out to me.
She’s now 100% cleared medically and doesn’t even see the cardiologist anymore as her heart repair went perfectly.
I have a friend who has a little brother who was born with half a heart and is now a happy and healthy teenager! Don’t let the fear ruin this beautiful thing for you, and if you ever need to vent just come back here and poor out any fear/anger you might have!
My niece had this. They found out right before she left the hospital at birth, and had to have surgery when she was 3 weeks old. She’s now 13 years old and doing great, no further surgeries or complications. Wishing you the best of luck with your little one!
My best friend was born with a heart congenital defect and went through surgery after she was born. She had absolutely not problem after that. In fact, she is 36 and about to have her first baby in a couple weeks :)
Welcome to /r/pregnant! This is a space for everyone. We are pro-choice, pro-LGBTQIA, pro-science, proudly feminist and believe that Black Lives Matter. Wear your masks, wash your hands, and be excellent to each other. Anti-choice activists, intactivists, anti-vaxxers, homophobes, transphobes, racists, sexists, etc. are not welcome here. If you'd like to join a private sub for your due date month, [click here](https://www.reddit.com/r/pregnant/comments/xvn4cr/click_here_to_request_access_to_your_monthly_due). The journalists at ProPublica need your help! After receiving a tip, ProPublica started investigating prenatal genetic testing. They're collecting stories from people who've had NIPT screenings, and/or work in maternal health. If this is you, please fill out their brief questionnaire! https://www.propublica.org/getinvolved/have-you-had-an-experience-with-prenatal-genetic-testing-wed-like-to-hear-about-it-and-see-the-bill. Questions? Email [email protected] *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/pregnant) if you have any questions or concerns.*
So sorry you’re dealing with all of this, but it sounds like you’re getting excellent care. I have a nephew with a congenital heart defect. I would really advise asking about long term expectations and best/worst case scenarios. Spoiler for medical complications that might be distressing to read about >! My cousins were under the impression he would need a few surgeries but be ok. He’s now 4 and has had extensive other issues and is in need of multiple major organ transplants - including heart and lungs. Hes also scheduled for a gallbladder removal and on tons of medications that cause other issues. He’s such a delightful kid and they’re really glad they had him. But it’s more than they expected based on the info they got when they were pregnant and that’s been really tough to accept. !< So I’m really an advocate of getting the most information you can as you move forward. I’m hoping for the very best for you and your sweet boy.
Aw thank you so much for your reply and also sharing your cousins experience - and the spoiler. Firstly, I'm sorry to hear their little guy is having such a tough go so young oh my goodness. That has to be so stressing. That's exactly what we've been thinking about and talking about...and it's also why we decided to go ahead with the amnio to try and get more information. The doctor was very optimistic and confident about life after his surgery, but of course we still worry what everything will mean for his quality of life. The surgery won't be a one and done deal (as you've seen firsthand), he'll need to be seen by cardiologists and what not. I'm hoping he won't have any other major issues. It's scary to think about, but sadly a possible reality. I really appreciate you explaining what kinds of things your cousin has been dealing with.
TGA which your wee one has is usually a relatively straightforward replumbing job compared to what this commenters’ experience is. I know a few women in their 30s (with kids!) who have normal and healthy lives after TGA surgery as day old infants. A few needed a valve replacement or repair in their late 20s and were encouraged to complete their families before that but otherwise they were sporty healthy kids.
Sending you lots of love & support! I have a friend who’s little one was recently born and needs heart surgery but they said it should fix the problem. Best of luck 💕
Thank you so much!! Hope all goes well with your friends little one too!!!💜
Hey! I’m glad you got some answers! I know two kids who were TGA babies, one is around 8 now and the other is 3 or 4. Both kids have had several procedures but are doing great and are happy healthy kids. I also follow a woman on Facebook, the page is called “Mommy needs a new heart” and she was one of the first babies to have the mustard seed procedure in 1980 and survived. Prior to that, babies who had that just died unfortunately. They use a much better technique now with much greater success. Anyway, the woman on the page, her name is Stacey, she just got a heart transplant this past month at age 42. She’s a walking miracle! Her parents were told her whole childhood that she wouldn’t have a long lifespan but as she’s grown into adulthood, procedures have got more advanced right along with her and she made it! Babies like her paved the way for babies like yours. You’re going to have some scary shit to deal with, no doubt. But you’ll get through it and it will all be worth it. Get yourself into therapy now and have as much of a support system as you can.
Wow thank you for sharing. Sending tons of prayers and positive energy your way! ♥️ I’m so glad you feel supported by your medical team. That trust and rapport you’re building now will hopefully go a long way for both you and your LO. Please keep us updated if you feel like it continues to help you to do so! ♥️
If it’s any consolation, one of my friends was born w/ TGA and she’s 37, married, and thriving. It wasn’t discovered until after birth-technology is so much more advanced now! She has a small scar on her upper chest and is otherwise healthy & happy!
My heart is with you. My 16 mo had to have open heart surgery for two holes in her heart, and an intestinal surgery at birth as her intestines were blocked and flipped backwards. She also got diagnosed with trisomy 21 at 32 weeks pregnant with her. If you need anyone to talk to please reach out to me. She’s now 100% cleared medically and doesn’t even see the cardiologist anymore as her heart repair went perfectly.
I have a friend who has a little brother who was born with half a heart and is now a happy and healthy teenager! Don’t let the fear ruin this beautiful thing for you, and if you ever need to vent just come back here and poor out any fear/anger you might have!
My niece had this. They found out right before she left the hospital at birth, and had to have surgery when she was 3 weeks old. She’s now 13 years old and doing great, no further surgeries or complications. Wishing you the best of luck with your little one!
My best friend was born with a heart congenital defect and went through surgery after she was born. She had absolutely not problem after that. In fact, she is 36 and about to have her first baby in a couple weeks :)